Konsortialavtal
Konsortialavtal
avseende
Vetenskapsrådets
bidrag för infrastrukturen av nationellt intresse
Nationell E-infrastruktur för forskning om åldrande i Sverige
“NEAR”
Värduniversitet
1
Detta Avtal ("Avtalet") har ingåtts mellan
(1) Karolinska institutet; org. nr. 202100-2973, 171 77 Stockholm, ("KI");
(2) Blekinge Tekniska Högskola, org. nr. 202100-4011, 371 79 Karlskrona (”BTH”)
(3) Göteborgs universitet; org. nr. 202100-3153, 405 30 Göteborg, ("GU");
(4) Stiftelsen Högskolan i Jönköping, xxx.xx: 826001-7333 Jönköping (”JU”),
(5) Lunds universitet, org. nr. 202100-3211, 221 00 Lund, ("LU");
(6) Umeå universitet, org. nr. 202100-2874, 901 87 Umeå, ("UmU");
xxxxx var för sig benämnda "Part" samt gemensamt "Parterna".
1 BAKGRUND OCH SYFTE
1.1 Följande konsortialavtal (”Avtalet”) reglerar Parternas samarbete inom infrastrukturen Nationell E-infrastruktur för forskning om åldrande i Sverige (NEAR), som följer av ansökan om finansiering till Vetenskapsrådet daterad den 7 mars 2017 samt Vetenskapsrådets beslut om infrastrukturstöd till en nationell infrastruktur för öppen tillgång till forskningsdata, under utlysningen Bidrag till infrastruktur av nationellt intresse (2017-00627). Den nationella infrastrukturen benämns NEAR: Nationell e-infrastruktur för forskning om åldrande i Sverige, (eng: NEAR: The National E-instrastucture for Aging Research in Sweden). Fortsättningsvis benämns infrastrukturen ”NEAR”.
1.2 Parterna är överens om att lojalt verka inom den nationella infrastrukturen NEAR och driva samt förvalta NEAR i enlighet med Ansökan.
1.3 Vetenskapsrådet har beslutat om delfinansiering av NEAR:s verksamhet enligt bidragsbeslut av den 27 september 2017 och bidragsvillkor av den 18 december 2017, vilka biläggs så som Bilaga 1. Som värduniversitet förvaltar och administrerar KI Vetenskapsrådets bidrag i enlighet med Ansökan, Beslutet, detta Avtal och Styrgruppens beslut.
1.4 NEAR:s verksamhet ska bestå av det centrala NEAR-kontoret hos KI (”Infrastrukturkontoret”), Aging Research Center (ARC), Institutionen för Neurobiologi, vårdvetenskap och samhälle. Härutöver kommer den operativa verksamheten följaktligen bedrivas på olika platser över landet: dels vid Värduniversitetet, dels hos Parterna.
2 DEFINITIONER
2.1 Med ”Ansökan” avses Parternas ansökan till Vetenskapsrådet om finansiering enligt bilaga 2.
2.2 Med ”Användare” avses svenska och internationella brukare från akademiska eller icke-akademiska parter samt från den offentliga sektorn, som har tillgång till infrastrukturen genom av Styrgruppens godkända projektansökningar, oavsett om dessa brukare kommer från någon av Parterna eller inte.
2.3 Med ”Beslutet” avses Vetenskapsrådets beslut som beskrivs i punkt 1.3.
2.4 Med ”Bidragsvillkoren” avses Vetenskapsrådets bidragsvillkor för beslutad finansiering enligt Bilaga 1.
2.5 Med ”Föreståndaren” avses den person som är anställd vid Värduniversitetet och som leder arbetet i enlighet med vad som närmare anges i punkt 3.4.1.
2.6 Med ”Infrastrukturkontoret” avses den grupp som närmare beskrivs under punkt 3.4.2.
2.7 Med "In-kind insats" avses annan insats än kontantinsats som en Part under detta Avtals giltighet bidrar med för att utveckla, driva och förvalta NEAR och som har godkänts av Infrastrukturkontoret. In-kind insatser kan fullgöras t.ex. genom att Part bidrar med lösa saker i form av förbrukningsartiklar, utrustning eller maskiner eller genom att Part upplåter nyttjanderätt till av Part ägd eller innehavd fast eller lös egendom (inbegriper lokaler och immateriella rättigheter) eller genom att Parts anställda eller medhjälpare fullgör arbetsprestationer.
2.8 Med "Samverkansresultat" avses information förenad med immateriella rättigheter, som är framtagna för att användas inom NEAR:s infrastruktur, såsom mjukvara och källkoder och som genereras genom Parternas deltagande inom den samverkan som sker enligt detta Avtal. Däremot utgör data och andra Immateriella rättigheter som Part/användare tillför NEAR för att användas i Samverkansresultat inom ramen för brukandet av NEAR inte Samverkansresultat och omfattas inte heller i övrigt av detta Avtal.
2.9 Med "Strategisk plan" avses den långsiktiga planen för bedrivandet av verksamheten inom NEAR.
2.10 Med "Styrgruppen” avses det högsta beslutande organet inom NEAR, vilket utgörs av stämmomötet mellan Parterna i enlighet med punkt 3.2.
2.11 Med "Verksamhetsplan" avses den årliga detaljerade planen för NEAR:s verksamhet och som är en omvandling av den Strategiska planen till operativ verksamhet.
2.12 Med "Värduniversitet" avses i enlighet med Vetenskapsrådets beslut om bidrag, KI. Värduniversitetet intar en för Parternas samverkan central roll såsom varande huvudsaklig ansvarig för samverkan.
3.1 Övergripande beskrivning
Värduniversitetet har ett övergripande ansvar för NEAR enligt Ansökan och Beslutet. Parterna utövar sitt inflytande över verksamheten genom Styrgruppen (NEAR Stearing Board) som ska agera självständigt relativt Värduniversitetets och vara beslutsfattande gällande verksamhet för NEAR. En föreståndare ska utses som är operativt ansvarig för den löpande verksamheten inom NEAR och som är ordförande i Styrgruppen. Föreståndaren stöds av Infrastrukturkontoret.
3.2 Styrgruppen (Steering Board)
3.2.1 Sammansättning
Styrgruppen ska bestå av en ledamot som är huvudansvarig forskare (Principal Investigator , ”PI”) för varje NEAR lokal databas/kohort och en representant från KI:s Styrelse för forskning. Värduniversitetet utser ytterligare representant utan formell rösträtt. Parterna ska aktivt verka för en jämn könsfördelning inom Styrgruppen.
Styrgruppen kommer att från 2018 bestå av följande ledamöter: Karolinska Institutet (Xxxxx Xxxxxxxxxxx, Xxxxxx Xxxx, Xxxxx Xxxxxxxx, Xxxxx Xxxxxxxxxxx, Xxxxxx Xxxx, Xxxxxxxx Xxxxxxxxxxx och Xxxx Xxxxx), Bleking Tekniska Högskola (Xxxxx Xxxxxxxx), Göteborgs universitet (Xxx Xxxxxxxxx, Xxxxxx Xxxxx), Stiftelsen Högskolan i Jönköping (Xxxx X.Xxxx Xxxxx), Lunds universitet (Xxxxx Xxxxxxxx), Umeå universitet (Xxxxxx Xxxxxxxx, Xxxx Xxxxxx).
3.2.2 Ordförande
Professor Xxxxx Xxxxxxxxxxx ska vara Styrgruppens ordförande (”Ordföranden”). Ny Ordförande kan utses av Värduniversitetet efter samråd med övriga Parter och Vetenskapsrådet. Ordföranden ska leda Styrgruppens arbete, kalla till sammanträden och i övrigt bevaka att Styrgruppen och Parterna fullgör sina uppgifter.
3.2.3 Sammanträden
Ledamot är skyldig att närvara vid Styrgruppens sammanträden. Ledamot har rätt att framställa förslag till beslut inför Styrgruppen. Förslagen ska framställas skriftligen till Ordföranden i god tid så att detta kan tas in i kallelsen enligt andra stycket nedan. Part som kan visa att Partens eget arbete, kostnader, enskild pågående studie eller verksamhet i övrigt skulle påverkas väsentligt på ett negativt sätt till följd av ett beslut av Styrgruppen har rätt att utöva veto mot det aktuella beslutet eller relevant del av beslutet. Om beslutet finns beskrivet i agendan måste sådant veto utövas under mötet. Om beslutet har lagts till agendan (innan eller efter mötet) eller om beslutet har fattats utan ett möte, måste veto utövas skriftligen genom meddelande till Styrgruppens ordförande inom 14 dagar från det att Part har mottagit meddelande om beslutet.
Ordförande ska sammankalla ledamöterna till Styrgruppen minst två gånger per år. Ordföranden ska kalla till extra Styrgruppen om Part begär det. Kallelse till Styrgruppen ska skickas ut skriftligen senast 3 veckor innan sammanträdet ska äga rum. Kallelsen ska innehålla dagordning som beskriver varje beslutsärende vid Styrgruppen och relevanta underlag.
Varje Part har rätt att skriftligen till Ordförande innan sammanträdet ska äga rum även anmäla tillägg av ärenden till dagordningen. Beslut i sådan tillkommande fråga får enbart fattas om samtliga ledamöter är närvarande vid mötet och bekräftar att de har fått tillfredsställande underlag inför beslutet.
3.2.4 Styrgruppens beslutsfattande
Styrgruppen är behörig att fatta beslut om minst två tredjedelar av antalet ordinarie ledamöter är närvarande. Möten får också hållas på distans med hjälp av konferensteknologi som exempelvis telefon-, Skype videokonferens eller annan typ av telekommunikation.
Varje ledamot har en röst. Styrgruppens beslut fattas i första hand genom konsensus. Om konsensus inte kan uppnås, ska beslut fattas med två tredjedelars majoritet.
Ordföranden ska tillse att protokoll förs vid Styrgruppen där varje beslut tydligt
dokumenteras. Detta ska skickas till samtliga ledamöter inom 30 dagar efter Styrgruppens möte. Protokollet ska undertecknas av den som har varit protokollförare och justeras av Ordföranden (eller av annan ledamot om Ordföranden har fört protokollet) och vid mötet vald justeringsman. Ledamöterna har rätt att få en avvikande mening antecknad till protokollet. Styrgruppens protokoll ska föras i nummerföljd och förvaras på ett betryggande sätt och i enlighet med arkivlagen (1990:782) vid Värduniversitetet.
3.2.5 Styrgruppens kompetens
Styrgruppen är det högsta beslutande organet inom NEAR och kan, om annat inte framgår av detta Avtal, besluta i alla frågor rörande verksamheten. Styrgruppen ska alltid fatta beslut i följande frågor:
• Beslut om verksamhetens strategiska utveckling, Strategisk plan, Verksamhetsplan och inriktning med målsättning att NEAR ska få den tillgänglighet bland användargrupper som framgår av bidragsvillkoren (Bilaga 1);
• fastställelse av årlig budget;
• tillsammans med Värduniversitetet ta fram urvalskriterier samt avtal för Användare som reglerar villkoren för nyttjandet av NEAR;
• fastställa policyer för prioritering av tillgång till NEAR, tillgängliggörande av forskningsdata och mjukvara som tas fram vid/med hjälp av NEAR;
• beslut om väsentlig förändring av verksamheten i förhållande till Ansökan och Beslutet, förutsatt att Vetenskapsrådet godkänt eller godkänner en sådan förändring;
• förslag till Parterna om ny parts tillträde till detta Avtal och villkoren härför;
• förslag till Vetenskapsrådet och Värduniversitetet om Parts utträde eller uteslutning av Part från detta Avtal och villkoren härför;
• beslut om avvecklingsplan; samt
• annat ärende som annars har upptagits i agendan eller framställts enligt punkt 3.2.3.
3.3 Externa Rådgivande kommittéer (Advisory Boards)
Styrgruppen ska utse tre rådgivande kommittéer (också benämnd ”Advisory Boards”) som bör sammanträda med Styrgruppen minst två gånger per verksamhetsår för att följa upp och ge råd kring Parternas samverkan med beaktande av den vetenskapliga och internationella utvecklingen inom det relevanta verksamhetsområdet. Styrgruppen har rätt att fatta beslut om hur många
och vilka ledamöter kommittén ska bestå av samt de närmare formerna för kommitténs arbete.
Styrgruppen kan fatta beslut om att resekostnader ska betalas till kommittéledamöterna. Ett arvode för deltagande i den externa rådgivande kommittén utgår inte.
3.4 Värduniversitets ansvar
Värduniversitetet åtar sig att ombesörja administrationen av samverkan, i den mån det inte ankommer på Styrgruppen, Föreståndaren eller Infrastrukturkontoret.
Värduniversitetet ansvarar för att hålla Vetenskapsrådet underrättad om omständigheter som väsentligt försenar eller förhindrar genomförandet av Verksamhetsplanen eller den Strategiska planen.
Värduniversitetet är värd för den operativa stödjande verksamheten i form av Infrastrukturkontoret. Infrastrukturkontoret ska stödja NEAR så att de vetenskapliga målen uppnås med kompetenser i form av databasexpertis, publikationsstöd, samt kompetens för att ge stöd i etiska och legala frågor. Infrastrukturkontoret har en grundbemanning som vid behov kan utökas för att möta av Styrgruppen uppsatta vetenskapliga mål.
3.4.1 Föreståndaren
Värduniversitetet ska efter samråd med Vetenskapsrådet utse Föreståndaren. Värduniversitetet utser Prof. Xxxxx Xxxxxxxxxxx som Föreståndare. Föreståndarens mandatperiod ska vara fem år i taget såvida inte Värduniversitetet beslutar annat i det enskilda fallet.
Föreståndaren ska leda verksamheten vid Infrastrukturkontoret. Föreståndaren bevakar i övrigt att Infrastrukturkontoret fullgör de uppgifter som den är anförtrodd med. Rollen innebär att ansvara för den övergripande samordningen samt att inhämta och framlägga förslag till förändringar av Verksamhetsplan och Strategisk plan för beredning inför Styrgruppen beslut. Föreståndaren ansvarar för att verksamheten vid infrastrukturen sker i samklang med den övergripande inriktningen enligt ansökan och beviljat stöd från Vetenskapsrådet.
3.4.2 Infrastrukturkontoret
Infrastrukturkontoret ska finnas vid Värduniversitetet och utgörs av en stab med relevant kompetens för att stödja infrastrukturen.
Infrastrukturkontoret ska genomföra Värduniversitetets övergripande åtagande för infrastrukturen, inhämta och sammanställa underlag från Parterna inför uppföljning, prioritering och rapportering.
Infrastrukturkontoret ska stödja Föreståndaren administrativt för att nå de gemensamt prioriterade målen för ”NEAR”. Infrastrukturkontoret ska således:
• lämna förslag till Styrgruppen för årsbudget, Verksamhetsplan och Verksamhetsberättelse;
• fortlöpande bedöma NEAR:s resursnyttjande samt ha löpande uppsikt över resultatenhetens ekonomiska situation, följa upp fastställd budget och se till att organisationen är utformad så att medelsförvaltningen och de ekonomiska förhållandena i övrigt kontrolleras på ett betryggande sätt;
• svara för att upprätta och vid behov revidera skriftliga instruktioner som är nödvändiga inom NEAR:s verksamhet och följa upp att dessa efterlevs;
• hålla Parterna underrättade om omständigheter som väsentligt försenar eller förhindrar genomförandet av Verksamhetsplanen eller den Strategiska Planen;
• lämna förslag till Styrgruppen om eventuell uteslutning av Part vid Parts avtalsbrott som inte har rättas på ett tillfredsställande sätt enligt 14.1;
• bereda och lämna förslag till Styrgruppen rörande avvecklingsplan; samt
• verkställa fastställd avvecklingsplan.
4.1 Vetenskapsrådet lämnar bidrag till verksamheten i enlighet med Beslutet för åren 2018-2022. Vetenskapsrådets bidrag består av kontanta medel som utbetalas till Värduniversitetet i enlighet med Beslutet. Värduniversitetet ska förvalta och använda medlen samt vidaretransferera medlen till Parterna i enlighet med Beslutet och Ansökan. Värduniversitetet ska hålla beloppet avskilt och låta det disponeras för Parternas räkning av Styrgruppen.
4.2 Parters ekonomiska åtaganden skall fullgöras genom In-kind insatser och/eller kontantinsatser för drift av de lokala databaserna vid Parternas lärosäten i enlighet med Ansökan. Part kan inte avräkna värdet av fullgjord In-kind insats mot utlovad kontantinsats. Parternas betalning av kontantinsatser ska fullgöras fortlöpande i enlighet med Styrgruppsbeslut, den Strategiska planen, årlig budgetplan och detta Avtal.
4.3 Part ansvarar för att Partens kostnader inte överskrider beslutad budget. Solidariskt ansvar föreligger således inte.
4.4 Användare som vill nyttja resurser för forskningsprojekt kommer att få betala en av Styrgruppens beslutad projektavgift som delvis täcker infrastrukturkostnaderna. Styrgruppen får besluta om lägre projektavgifter alternativt ingen avgift för huvudansvarig forskare och brukare som är anknutna till huvudansvarig forskare vid respektive Part.
5.1 Parternas ansvar
5.1.1 Så länge finansieringen från Vetenskapsrådet består åtar sig Parterna att under avtalstiden lojalt samverka inom NEAR och genomföra de uppgifter som framgår av Ansökan och bidragsvillkor, samt beslut av Styrgruppen i enlighet med detta Avtal. Varje Part ansvarar för sina respektive lokala databaser och för den fortsatta insamlingen och underhållet av data. Uppgifterna ska utföras i enlighet med gällande lagar och föreskrifter. Varje Part ska tillse att övriga Parter får den information som behövs för verksamheten och för fullgörande av Parternas skyldigheter.
5.1.2 Enligt bidragsvillkoren är Värduniversitetet, såsom medelsförvaltare ansvarig för redovisning och rapportering av NEAR:s verksamhet i förhållande till Vetenskapsrådet. Parterna ska underlätta detta genom att ge Värduniversitetet tillgång till ekonomisk redovisning rörande stödet från Vetenskapsrådet och om Parts verksamhet enligt detta Avtal. Parterna ska tillhandahålla nödvändigt administrativt stöd till Värduniversitetet för att detta ska kunna fullgöra uppföljning och rapportering av NEAR:s verksamhet inom två (2) veckor från förfrågan från Värduniversitetet.
5.1.3 Värduniversitetet åtar sig att ombesörja administrationen av samverkan, i den mån det inte ankommer på annan enligt detta Avtal.
5.2 Tillgång till Data
NEAR ska, enligt Vetenskapsrådets beslut, förvaltas av ett Värduniversitet men förutsätter insatser från övriga universitet. På Värduniversitetet finns ett Infrastrukturkontor där stödfunktioner avseende infrastrukturen finns samlad.
Insamling och förvaltning av data sker fortsättningsvist hos Parterna.
Parterna är överens om att infrastrukturens syfte är att NEAR ska vara en nationell infrastruktur för både nationella och internationella högkvalitativa forskningsprojekt.
Infrastrukturen och de lokala databaserna ska administreras av Parterna med säker lagring och spårbarhet av dess känsliga data och användning av data enligt dataskyddsförordningens (GDPR) krav.
Parterna är överens om att Infrastrukturkontoret ska granska ansökningarna från både nationella och internationella forskare men det är ledamot/PI som ansvarar för de berörda databaserna som ser till att tillgången till data gödkänns av respektive Part.
Parterna är också överens om att NEAR ska vidareutvecklas genom uppgradering till en dynamisk databasarkitektur. Ursprunglig data ska stanna kvar i de lokala databaserna där de samlas in. Vidare ska en ny nätverksportal skapas med centrala loggar.
6.1 Samverkansresultat ägs av den Part som genererat Samverkansresultatet eller, om så följer av lag eller överenskommelse, upphovsmannen vid den Parten. De Samverkansresultat som genererats av flera Parter ägs av dessa och/eller dessas upphovsmän gemensamt. De lokala NEAR-databaserna/kohorterna som Part (eller dess forskare) innehar eller disponerar och som har utvecklats eller förvärvats innan detta Avtal träffades och som fortlöpande kommer att kompletteras och utökas under avtalstiden är inte Samverkansresultat utan kommer fortsättningsvis att tillhöra den Part som utvecklar dem.
6.2 Varje Part ska se till att inom NEAR skapade Samverkansresultat som har betydelse för verksamheten inom NEAR och som Parten eller dess anställda eller medhjälpare genererat får utnyttjas av samtliga Parter för verksamheten inom NEAR och för egna icke-kommersiella ändamål kostnadsfritt och så länge som verksamheten bedrivs av Parten.
6.3 All publicering ska ske enligt vetenskaplig praxis och följa eventuella villkor som finns för Bidraget.
6.4 Om Parter behöver träffa överenskommelser mellan varandra eller med tredje part avseende rättigheter till Samverkansresultat ska detta regleras skriftligt i ett separat avtal.
7.1 Rapportering till Vetenskapsrådet
Värduniversitetet ansvarar för rapporter och löpande information till Vetenskapsrådet enligt Bidragsvillkoren. Parterna åtar sig att förse Föreståndaren och Värduniversitetet med underlag för sådana rapporter och i övrigt bistå Värduniversitetet så att rapporteringsskyldigheten kan fullgöras på ett adekvat sätt.
7.2 Rapportering till Parterna
7.2.1 Infrastrukturkontoret svarar för att Parterna hålls underrättade om omständigheter som väsentligt försenar eller förhindrar genomförandet av verksamheten.
7.2.2 Infrastrukturkontoret ska tillse att fastställd budget skickas till samtliga Parter för kännedom.
7.2.3 Infrastrukturkontoret ska varje år tillse att alla Parter får del av en årlig Verksamhetsberättelse för NEAR.
8.1.1 Värduniversitetet, Föreståndaren och Infrastrukturkontoret ska, om någon Part begär det, lämna upplysningar om verksamheten inom NEAR, om upplysningen bedöms kunna lämnas utan risk för skada för Part och det inte finns hinder p.g.a. sekretess eller tvingande reglering.
8.1.2 Part har alltid upplysningsplikt i förhållande till såväl Värduniversitetet, Föreståndaren som Infrastrukturkontoret, beträffande förhållanden som rör den NEAR -verksamhet som denne bedriver.
Part ska alltid själv eller genom auktoriserad revisor ges tillfälle att ta del av räkenskaper och andra handlingar som rör NEAR:s verksamhet hos Part. Om det kan ske utan oskäliga kostnader eller besvär, ska Värduniversitetet och/eller Infrastrukturkontoret på begäran hjälpa Parten med den utredning som behövs för ändamålet och tillhandahålla erfordrade kopior.
8.3 Vetenskapsrådets utvärdering
Part ger Vetenskapsrådet rätt att utvärdera och att få insyn i NEAR- verksamheten som bedrivs hos respektive Part i enlighet med vad som föreskrivs i bidragsvillkoren.
9 PARTS FÖRHÅLLANDE TILL ANSTÄLLDA OCH ANDRA MEDHJÄLPARE
Part ansvarar gentemot övriga Parter för sina anställda och för konsulter, underleverantörer och andra anlitade medhjälpare såsom för sig själv till den del Parten är huvudman för den aktuella verksamheten. Om flera Parter gemensamt anlitar en medhjälpare svarar endast de Parterna solidariskt för medhjälparen.
10 JÄV
Vid handläggning av ärenden och beslut som angår NEAR ska Part iaktta sin respektive tillämplig lagreglering angående jäv (förvaltningslagen [1986:223]).
11 SEKRETESS
I Parternas verksamhet såväl som för detta Avtal, tillämpas offentlighets- och sekretesslagen (2009:400). Vid tillämpningen av Offentlighets- och Sekretesslagen utgör Parterna separata enheter.
12 AVTALSTID
12.1 Detta Avtal träder ikraft när samtliga Parter har behörigen undertecknat det. Avtalet gäller under den tid bidragsbeslutet från Vetenskapsrådet gäller och till dess slutrapport godkänts.
12.2 Parterna ska senast 12 månader innan Vetenskapsrådets tilldelningsbeslut upphör, inleda samtal om huruvida samverkan ska förlängas och inleda
diskussioner med Vetenskapsrådet kring villkoren för eventuellt fortsatt bidrag. Om tilldelningsbeslutet inte förlängs eller annan finansiering erhålls ska avveckling ske enligt fastställd avvecklingsplan. Infrastrukturkontoret ska upprätta en slutrapport över verksamheten. Slutrapporten ska tillställas övriga Parter för yttrande och skickas till dessa i sin slutliga form.
13 FRÅNTRÄDANDE OCH UTESLUTNING
13.1 Part som vill frånträda detta avtal i förtid ska anmäla detta till Infrastrukturkontoret. Styrgruppen ska därefter, efter godkännande av Vetenskapsrådet, besluta om när sådant frånträde kan äga rum och formerna härför (varvid utträdande part inte har rösträtt). Det åligger part att fullgöra samtliga sina förpliktelser fram till det datum då utträde kan ske enligt Xxxxxxxxx överenskommelse, varvid förpliktelserna ska fullgöras till den del det belöper på tiden innan utträdet.
13.2 Efter förslag från Styrgruppen enligt punkt 3.2., får Värduniversitetet och Vetenskapsrådet gemensamt fatta beslut om uteslutning av Part om Parten väsentligt åsidosätter sina skyldigheter enligt detta Avtal, Bidragsvillkoren (Bilaga 1) eller annat åtagande, eller annars viktig grund föreligger.
13.3 Samverkan under detta Avtal ska fortsätta mellan övriga Parter utan hinder av att en eller flera Parter har frånträtt Avtalet eller blivit utesluten.
14 AVTALSBROTT
14.1 Part som bryter mot detta Avtal är på begäran av drabbad Part skyldig att vidta rättelse och fullgöra sina skyldigheter om fullgörelse rimligen kan påfordras.
14.2 Avtalsbrott ska åberopas inom skälig tid från att det upptäcktes eller borde upptäckts (reklamation). Avtalsbrott får dock åberopas även om reklamation inte har skett, om den kontraktsbrytande Parten har handlat uppsåtligt eller grovt vårdslöst.
14.3 Om flera Parter drabbats samfällt av avtalsbrottet får krav på fullgörelse eller rättelse framföras av Parterna samfällt eller av Infrastrukturkontoret. Envar drabbad Part får för övriga Parter framföra reklamation för samtliga drabbade Parters räkning. Envar drabbad Part får framföra skadeståndsanspråk. Kopia av reklamation ska alltid skickas till Värduniversitetet.
14.4 Part ska under avtalstiden fortsätta att fullgöra sina förpliktelser även om vederbörande anser att annan Part begått avtalsbrott, såvida Infrastrukturkontoret inte beslutar annat för att avvärja risk för skada.
15 AVVECKLING
15.1 Parterna får, efter samråd med Vetenskapsrådet, besluta om förtida upphörande av NEAR:s verksamhet och detta Avtal. En avvecklingsplan för verksamheten ska finnas enligt Vetenskapsrådets bidragsvillkor. Det åligger Styrgruppen att anta en avvecklingsplan på förslag från Infrastrukturkontoret. Infrastrukturkontoret ska kontinuerligt hålla avvecklingsplanen uppdaterad och föreslå Styrgruppen
eventuella justeringar vid behov. Avveckling ska, med beaktande av vad som anges nedan, alltid ske i enlighet med den fastställda avvecklingsplanen.
15.2 Medel som Part har tillförts men som inte har förbrukats vid Avtalets upphörande ska återbetalas till Värduniversitetet. Ersättning för värdet av fullgjorda In-kind insatser utgår inte. Part har rätt att av de övriga Parterna erhålla ersättning för skäliga avvecklingskostnader. Ansvaret för avvecklingskostnader fördelas mellan Parterna i enlighet med avvecklingsplanen. Part kan enligt denna punkt aldrig bli skyldig att erlägga mer än sitt totala åtagande att göra kontantinsatser.
15.3 Oavsett vem som enligt Avsnitt 6 äger Samverkansresultat är Parterna eniga om att det – i linje med de intentioner och målsättningar som ligger till grund för Vetenskapsrådets bidrag till nationella forskningsinfrastrukturer – ligger i svensk forsknings intresse att de infrastrukturer som byggs upp kan fortleva och vidareutvecklas. Mot denna bakgrund är Parterna eniga om att för det fall Parternas samverkan enligt detta avtal ska avvecklas ska:
- Parterna ha nyttjanderätt för fortsatt forskning och utbildning till Samverkansresultat;
- Äganderätten till Samverkansresultat som har finansierats med Vetenskapsrådets bidrag ska samlas hos Part/Parter som kommer att driva hela eller del av NEAR:s verksamhet vidare.
16 ÖVERLÅTELSE
Part får inte överlåta, pantsätta eller på liknande sätt upplåta sakrätt till rättighet enligt detta Avtal, om inte skriftligt samtycke av samtliga övriga Parter föreligger. Part får inte heller utan sådant samtycke sätta annan i sitt ställe.
17 ANSVARSBEGRÄNSNING
17.1 Part ansvarar inte i förhållande till annan Part för indirekta skador eller följdskador, inklusive egendomsskador, skador genom produktionsbortfall, utebliven vinst, immaterialrättslig förlust eller skada genom intrång i annans rätt, eller annan förmögenhetsskada eller ideell skada, till följd av eller med anledning av detta Avtal, annat än om sådan skada har orsakats uppsåtligt eller genom grov vårdslöshet
17.2 För övriga skador utöver vad som nämns i punkten 17.1 ovan är Parts sammanlagda ansvar begränsat till ett skäligt belopp med hänsyn tagen till skadans art samt verksamhetens art och ekonomiska omfattning. Skadeståndsskyldigheten gäller endast i den omfattning sådant skadeanspråk omfattas av befintliga försäkringar och sammanlagt maximalt det försäkringsbelopp som sådana försäkringar täcker.
18 FORCE MAJEURE
18.1 Om Parts fullgörande av sina åtaganden enligt detta Avtal väsentligen försvåras eller förhindras på grund av hinder utanför Partens kontroll som Parten inte
skäligen kunde förväntas ha räknat med vid Avtalets ingående och vars följder Xxxxxx inte heller skäligen kunde ha undvikit eller övervunnit, ska detta utgöra grund för befrielse från ansvar för dröjsmål och från skadestånd och andra påföljder.
18.2 Den Part som underlåter att fullgöra en skyldighet av sådana skäl som anges i punkt 18.1 ska omgående underrätta Infrastrukturkontoret. Består hindret i mer än trettio (30) dagar, får Värduniversitetet efter Vetenskapsrådets godkännande fatta beslut om uteslutning enligt punkt 13.2, varvid Parten frånträder Avtalet med omedelbar verkan utan vidare förpliktelser för någon Part.
19 INGEN FÖRETRÄDARRÄTT ELLER BOLAG
Parterna bekräftar att förevarande Avtal utgör ett konsortialavtal och att Parterna inte genom detta Avtal får rätt att företräda varandra gentemot tredje man. Inte heller bildas genom detta Avtal någon joint venture, agentur, enkelt bolag eller annan form av formell affärsförbindelse eller juridisk person. Parterna får endast nyttja annan Parts namn, närings- eller varukännetecken efter uttryckligt samtycke.
20 ÄNDRINGAR OCH TILLÄGG
Eventuella ändringar och/eller tillägg till detta Avtal ska, för att vara bindande, avfattas skriftligen och vara undertecknade av behöriga företrädare för samtliga Parter.
21.1 Parterna åtar sig att försöka lösa tvister i anledning av detta Avtal genom förhandlingar. Om en meningsmotsättning uppstår som inte kan lösas inom tjugo
(20) arbetsdagar av personer på operativ nivå hos inblandade Parter, får berörd Part hos övriga berörda Parter påkalla att förhandlingar ska inledas mellan personer från de berörda Parternas verkställande ledningar eller motsvarande.
21.2 Om inblandade Parter misslyckas med att finna en förhandlingslösning inom 20 arbetsdagar (eller inom annan tid som de skriftligen enar sig om) ska tvisten hänskjutas till regeringen för slutligt och bindande avgörande. Om tvisten avser förhållande mellan Part/Parter som är statlig myndighet och Part som inte är statlig myndighet ska tvisten i stället hänskjutas till domstol.
22 FULLSTÄNDIG REGLERING OCH RANGORDNING
22.1 Avtalet består av denna avtalstext, Vetenskapsrådets bidragsvillkor (Bilaga 1), och Parternas ansökan till Vetenskapsrådet (Bilaga 2). I den mån innehållet i denna avtalstext, Ansökan och Bidragsvillkoren strider mot varandra har bidragsvillkoren företräde. I den mån innehållet i Ansökan och innehållet i denna avtalstext strider mot varandra har innehållet i denna avtalstext företräde.
22.2 Inga andra skriftliga eller muntliga åtaganden och utfästelser som föregått Avtalet utgör innehåll i detta Avtal.
Avtalet har upprättats i sex original, varav ett exemplar ska förvaras hos respektive Part.
Särskilda villkor för bidrag till infrastruktur av nationellt intresse avseende NEAR
För beslut om bidrag från Vetenskapsrådet gäller rådets generella villkor. För infrastrukturer av nationellt intresse gäller, utöver de generella villkoren 2017 (DNR: 2016-07127), även särskilda villkor. De särskilda villkoren har fastställts av Vetenskapsrådets generaldirektör den 2017-12-18. Vid en eventuell konflikt mellan de generella villkoren och de särskilda villkor som har meddelats för ett beslut har de särskilda villkoren för beslutet företräde.
Definitioner
I Vetenskapsrådets generella villkor för bidrag till forskning eller forskningsstödjande verksamhet definieras ett antal ord och begrepp. När de generella villkoren används tillsammans med de särskilda villkoren för infrastrukturbidrag ska betydelsen av vissa definitioner ändras enligt nedan:
Projektledare Rektor vid medelsförvaltaren.
Sökande Synonymt med medelsförvaltaren.
Projekt Infrastrukturen.
När de generella bidragsvillkoren använder begreppen forskning, forskningsändamål och liknande avses för infrastrukturbidrag istället infrastrukturen, ändamålet med infrastrukturen osv.
I de särskilda villkoren används även definitionerna med nedan angiven betydelse:
Infrastruktur En infrastruktur möjliggör forskning av hög kvalitet genom att
tillhandahålla utrustning, tjänster, data och liknande, i enlighet med Vetenskapsrådets villkor. Infrastrukturens verksamhet ska bedrivas som en organisatoriskt och ekonomiskt avskild enhet vid medelsförvaltaren.
Lärosäte Utöver svenska universitet och högskolor, inkluderas även andra svenska myndigheter med forskningsuppdrag.
Rektor Utöver rektorer vid svenska lärosäten inkluderas även myndighetschefer vid svenska myndigheter med forskningsuppdrag.
1. Om bidragsbeslutet
Bidraget är beslutat inom ramen för utlysningen Bidrag till infrastruktur av nationellt intresse 2017.
2. Infrastrukturens verksamhet
I Vetenskapsrådets generella villkor för bidrag till forskning eller forskningsstödjande verksamhet gäller inte avsnitten 2.2 och 2.6. I avsnitt 2.10 gäller endast punkt sex och sju, d.v.s. ”årligen lämna in ekonomisk återrapportering enligt Vetenskapsrådets anvisningar, samt använda bidraget enligt i beslutet angivna villkor samt svara för administration av verksamheten.”
Infrastrukturens syfte är att främja och underlätta svensk äldreforskning, öka kvalitet och generaliserbarhet av forskningsresultat samt att intensifiera internationella samarbeten.
2.1 Vetenskapsrådets bidrag
Kostnader som täcks av Vetenskapsrådets bidrag ska i lärosätets redovisning vara särskiljbara från lärosätets övriga transaktioner.
Det av Vetenskapsrådet beslutade bidraget är fördelat på kostnader för drift respektive vetenskaplig utrustning eller upphandlade tjänster enligt nedan. Externt upphandlade tjänster redovisas separat i tabell 2.1.b och hanteras med samma villkor som vetenskaplig utrustning.
2018 | 2019 | 2020 | 2021 | 2022 | |
Drift | 17 430 000 SEK | 19 048 000 SEK | 21 366 270 SEK | 18 793 246 SEK | 17 947 000 SEK |
Tabell 2:1.a Vetenskapsrådets bidrag för drift.
Bidragsperioden, tillika dispositionstiden, för bidraget till drift är 5 år. Bidragsperioden startar den 20180101 och slutar den 20221231.
2018 | 2019 | 2020 | 2021 | 2022 | |
Vetenskaplig utrustning | |||||
IT platform | 20 000 SEK | 120 000 SEK | 220 000 SEK | 320 000 SEK | 380 000 SEK |
Software | 25 000 SEK | 25 000 SEK | 25 000 SEK | 25 000 SEK | 25 000 SEK |
Totalt | 45 000 SEK | 145 000 SEK | 245 000 SEK | 345 000 SEK | 405 000 SEK |
Upphandlade tjänster | |||||
External support - SUNET | 0 | 300 000 SEK | 300 000 SEK | 300 000 SEK | 300 000 SEK |
External support - SNIC | 0 | 0 | 0 | 0 | 500 000 SEK |
External support – MAELSTROM | 400 000 SEK | 400 000 SEK | 200 000 SEK | 200 000 SEK | 100 000 SEK |
External support – SND | 300 000 SEK | 200 000 SEK | 200 000 SEK | 100 000 SEK | 100 000 SEK |
Training OG | 180 000 SEK | 50 000 SEK | 50 000 SEK | 50 000 SEK | 50 000 SEK |
Totalt | 880 000 SEK | 950 000 SEK | 750 000 SEK | 650 000 SEK | 1 050 000 SEK |
Tabell 2.1.b Vetenskapsrådets bidrag till vetenskaplig utrustning och upphandlade tjänster.
Det slutliga bidragsbeloppet för vetenskaplig utrustning och upphandlade tjänster fastställs efter den ekonomiska slutredovisningen av bidraget. Om kostnader för vetenskaplig utrustning eller upphandlad tjänst, understiger det av Vetenskapsrådet beviljade bidraget ska outnyttjat bidrag återbetalas till Vetenskapsrådet.
2.2 Medelsförvaltarens åtaganden
Medelsförvaltaren ansvarar för att nödvändiga resurser för att genomföra verksamheten i Bilaga 1 (Infrastrukturens verksamhet) ställs till infrastrukturens förfogande och används i enlighet med respektive moduls beskrivning i ansökan samt Rådet för Forskningens Infrastrukturs beslut.
Medelsförvaltaren ansvarar vidare för att:
• det finns avtal mellan alla medlemmar i konsortiet där deras inbördes åtaganden, villkor och annat av betydelse för samarbetet regleras. Avtalet ska vara förenligt med Vetenskapsrådets villkor för bidraget, samt finnas på plats då utbetalning av bidraget påbörjas.
• alla medlemmar i konsortiet uppfyller Vetenskapsrådets villkor för bidraget.
• infrastrukturens verksamhet bedrivs på ett ändamålsenligt och kostnadseffektivt sätt,
• omgående meddela Vetenskapsrådet om verksamheten vid infrastrukturen inte längre kan bedrivas i enlighet med villkoren.
• bidrag till infrastrukturen, från andra än Vetenskapsrådet, inte har villkor eller bindningar som påverkar infrastrukturens objektivitet, oberoende eller tillgänglighet.
• den forskning som stöds av infrastrukturen inte har villkor eller bindningar som påverkar infrastrukturens objektivitet, oberoende eller tillgänglighet.
• verksamheten bedrivs i enlighet med gällande lagstiftning och förordningar samt att nödvändiga tillstånd finns.
• en avvecklingsplan finns. Avvecklingsplanen ska beskriva hur infrastrukturen kommer att hantera en situation när Vetenskapsrådets stöd avvecklas. Planen ska adressera hur tidigare gjorda investeringar, insamlade prover och data o.s.v. ska tillvaratas på ett strukturerat och ändamålsenligt sätt.
• NEAR under bidragsperioden ska ansluta sig till metadataverktyget Register Utiliser Tool, RUT. Samarbetet kommer att initieras av Vetenskapsrådet och regleras i särskild överenskommelse.
2.3 Medlemmar i konsortiet
Följande lärosäten eller institutioner med forskningsansvar ingår i konsortiet för NEAR:
• Karolinska institutet
• Blekinge tekniska högskola
• Göteborgs universitet
• Jönköpings universitet
• Lunds universitet
• Umeå universitet
Om konsortiets sammansättning ändras ska detta meddelas till Vetenskapsrådet, samt ett nytt avtal mellan medlemmarna upprättas. För förändring av konsortiets sammansättning gäller vad som stadgas i 4.2 Bidragsperiod och dispositionsrätt.
2.4 Rapportering av verksamhet
Rapportering till Vetenskapsrådet sker enligt nedan:
• strategisk plan ska inkomma till Vetenskapsrådet senast den 15:e juni 2018
• verksamhetsplan ska inkomma till Vetenskapsrådet senast den 30:e april 2018. Därefter årligen för nästkommande år senast den 15:e november
• verksamhetsberättelse för föregående år ska årligen inkomma till Vetenskapsrådet senast den 15:e april, med start 2019
• nyckeltal för föregående år ska rapporteras årligen till Vetenskapsrådet senast den 15:e april. Nyckeltal rapporteras i mall som tillhandahålls av Vetenskapsrådet
• lista över vetenskapliga publikationer som producerats med hjälp av data från infrastrukturen.
Med strategisk plan avses ett dokument som ska beskriva infrastrukturens planerade verksamhet och utveckling, inklusive större investeringar, under minst en femårsperiod framåt i tiden.
Den strategiska planen ska ange mål och en långsiktig handlingsplan för jämställdhet i användning, styrning och annan verksamhet vid infrastrukturen.
Verksamhetsplanen ska innehålla en plan för att uppnå/bibehålla jämställdhet i användning, styrning och annan verksamhet vid infrastrukturen.
All återrapportering sker enligt instruktioner från Vetenskapsrådet.
2.5 Utvärdering
Vetenskapsrådet kan vid behov genomföra en utvärdering av infrastrukturen under bidragsperioden. Syfte, tidpunkt och former för utvärderingen fastställs av Vetenskapsrådet och meddelas medelsförvaltaren senast två månader innan utvärderingen startar.
2.6 Ange Vetenskapsrådet som finansiär
Vid information om infrastrukturen ska Vetenskapsrådets stöd nämnas. Vid publicering och annan spridning av resultat från forskning som möjliggjorts av infrastrukturen ska detta anges genom att infrastrukturens namn, samt driftsbidragets diarienummer vid Vetenskapsrådets anges. Vid publicering av vetenskapliga originalartiklar ska detta anges under rubriken Acknowledgements1 eller motsvarande rubrik. Denna skyldighet gäller såväl infrastrukturens personal som forskare som använder infrastrukturen.
2.7 Tillgång till infrastrukturen
Infrastrukturen ska vara öppet tillgänglig, vilket innebär att användarna ska beviljas tillgång till infrastrukturen genom en transparent process baserad på vetenskaplig excellens, samt att användarna ska erhålla adekvat stöd för att nyttja infrastrukturen.
2.8 Tillgängliggörande av forskningsdata m.m.
Forskningsdata och mjukvara som tas fram vid infrastrukturen ska göras öppet tillgängliga så snart det är möjligt.
Prover som samlas in vid infrastrukturen ska göras tillgängliga så snart det är möjligt.
3. Ledning och styrning
Medelsförvaltaren ansvarar för att utse en styrgrupp för infrastrukturen, efter samråd med Vetenskapsrådet.
3.1 Styrgruppens sammansättning
Styrgruppen ska vara brett nationellt förankrad samt ha en jämn könsfördelning.
3.2 Styrgruppens uppdrag
Styrgruppen ska:
• besluta i strategiska frågor rörande infrastrukturens verksamhet (inklusive vetenskap, ekonomi och organisation), t.ex. genom att fastställa budget, verksamhetsplan, verksamhetsberättelse, strategisk plan och avvecklingsplan.
• fastställa policyer för infrastrukturens verksamhet, t.ex. för:
o prioritering av tillgång till infrastrukturen,
o tillgängliggörande av forskningsdata och mjukvara som tas fram vid/med hjälp av infrastrukturen,
o tillgängliggörande av prover som samlas in vid infrastrukturen
o kommersiell användning av resultat som tagits fram vid infrastrukturen.
1 Exempel på text som kan användas: ”We acknowledge INFRASTRUCTURE for provisioning of facilities and experimental support and we would like to thank x, y and z for assistance. INFRASTRUCTURE receives funding through the Swedish Research Council under the grant no xxxx-yyyyy."
4. Finansiella bestämmelser
Andra stycket under avsnitt 3.1, samt hela avsnitt 3.2 i Vetenskapsrådets generella villkor för bidrag till forskning eller forskningsstödjande verksamhet ska inte gälla.
4.1 Förvaltning av bidraget
Bidraget får endast användas för drift och vetenskaplig utrustning/upphandlade tjänster i infrastrukturen samt utveckling och test av funktionalitet , vilket ska framgå av Bilagan Infrastrukturens verksamhet. Verksamhet som inte framgår av Bilagan Infrastrukturens verksamhet kan ingå efter skriftlig överenskommelse med Vetenskapsrådet.
Bidraget får inte användas som finansiering av medverkan i EU-projekt om detta inte särskilt överenskommits. Bidraget får inte heller användas för doktorandlön, utbildningsbidrag, forskarskola, konferensbidrag, forskarutbyte, resebidrag för forskare som använder infrastrukturen, eller liknande.
4.2 Dispositionsrätt och bidragsperiod
För att betydande ändringar av bidragets disposition ska tillåtas, t.ex. delvis ändrad inriktning av verksamheten eller organisatoriska förändringar, krävs en skriftlig framställan från medelsförvaltaren till Vetenskapsrådet. Vetenskapsrådet kan efter prövning och inom ramen för beslutet om bidrag bevilja ändringar.
4.2.1 Bidrag för drift
Den del av bidraget som avser driftskostnader betalas ut månadsvis och får endast disponeras under bidragsperioden, tillika dispositionstid (anges under 2.1).
4.2.2 Bidrag till vetenskaplig utrustning och upphandlad tjänst
Utbetalning av bidrag för vetenskaplig utrustning och upphandlade tjänster sker månadsvis och kostnaderna redovisas i slutredovisningen. Det slutliga bidragsbeloppet fastställs efter den ekonomiska slutredovisningen.
Vetenskapsrådet har rätt att följa upphandlingsarbetet. Om upphandlingen inte kan slutföras inom utsatt tid ska en ansökan om förlängd tid för upphandling vara Vetenskapsrådet tillhanda senast en månad innan redovisningstillfället.
Vid inköp av kommersiellt tillgänglig utrustning ska medelsförvaltaren göra ett samlat inköp. Tullfrihet ska sökas för utrustning som finansieras med bidrag från Vetenskapsrådet.
4.3 Förtida avveckling av bidraget
Avsnitt 4.1.2 i Vetenskapsrådets generella villkor för bidrag till forskning eller forskningsstödjande verksamhet ska inte gälla.
Om villkoren för utlysningen enligt utlysningstexten inte längre är uppfyllda kan Vetenskapsrådet besluta om förtida avveckling av bidraget.
4.3.1 Bidrag för drift
Om kostnader för drift, vid tidpunkten för beslut om förtida avveckling av bidraget, understiger det av Vetenskapsrådet beviljade bidraget för drift ska outnyttjat bidrag återbetalas till Vetenskapsrådet.
4.3.2 Bidrag för vetenskaplig utrustning
Om Vetenskapsrådet beslutar om förtida avveckling av bidraget ska pågående upphandling av vetenskaplig utrustning avbrytas och outnyttjat bidrag till vetenskaplig utrustning återbetalas till Vetenskapsrådet.
4.4 Redovisning av bidraget
4.4.1 Bidrag till drift
En ekonomisk redovisning av föregående års bidrag till drift ska årligen inkomma till Vetenskapsrådet senast den 15:e april. Den första redovisningen sker 2019 För detta används den blankett som Vetenskapsrådet tillhandahåller.
En ekonomisk slutredovisning av driftsbidraget sker senast den 15:e april året efter att bidragsperioden avslutats.
4.4.2 Bidrag till vetenskaplig utrustning och upphandlad tjänst
Bidrag till vetenskaplig utrustning och upphandlade tjänster ska redovisas, inklusive kopior på fakturor eller avtal med leverantörer, till Vetenskapsrådet enligt den blankett som Vetenskapsrådet tillhandahåller. Redovisning av bidraget ska inkomma till Vetenskapsrådet senast den 2023-04-15.
Baserat på den ekonomiska slutredovisningen av utrustning fastställs det slutliga bidragsbeloppet.
4.4.3 Revisorsintyg
Om Vetenskapsrådets totala bidrag till infrastrukturens verksamhet under den aktuella bidragsperioden uppgår till fem miljoner kronor eller mer ska ett revisorsintyg från auktoriserad/godkänd revisor bifogas till den årliga ekonomiska redovisningen, samt till den ekonomiska slutredovisningen. Revisorsintyg ska även bifogas från övriga konsortiemedlemmar om de tar emot minst fem miljoner per år av bidraget. Revisorsintyg från internrevisor accepteras.
I revisorsintyg intygar revisor att redovisade kostnader för projektet hämtats ur lärosätets redovisning, att kostnaderna har uppkommit under den bidragsperiod som framgår av beslutet, att kostnaderna är verifierade (styrkta) och att lärosätets redovisningsrutiner är utformade i enlighet med god redovisningssed.
4.5 Återbetalning av outnyttjat bidrag
4.5.1 Återbetalning av outnyttjat bidrag till drift
Om kostnader för drift, i slutredovisningen, understiger det av Vetenskapsrådet beviljade bidraget för drift ska outnyttjat bidrag återbetalas till Vetenskapsrådet.
4.5.2 Återbetalning av outnyttjat bidrag till vetenskaplig utrustning eller upphandlad tjänst
Om kostnader för vetenskaplig utrustning eller upphandlad tjänst, i slutredovisningen, understiger det av Vetenskapsrådet beviljade bidraget ska outnyttjat bidrag återbetalas till Vetenskapsrådet.
5. Byte av medelsförvaltare
Byte av medelsförvaltare kan ske efter beslut av Vetenskapsrådet. Anhållan om att byta medelsförvaltare ska undertecknas av rektor vid medelsförvaltaren, den tilltänkta medelsförvaltaren, samt rektorerna vid alla lärosäten som är medlemmar i konsortiet.
Bilaga 1: Infrastrukturens verksamhet
Infrastrukturens verksamhet är i enlighet med det som finns beskrivet i ansökan, med undantag för följande som endast delvis finansieras:
• Modul 5: 5.7-5.9. (”NEAR coordinator”, ”NEAR data-use supervisor” samt ”Cost for data delivery to the users”)
• Modul 6: 6.25 (”Data collection JU”)
• Modul 7: 7.1 och 7.3 (”NEAR communicator” samt ”Courses and conferences”)
Bilaga 2: Nyckeltal för årlig återrapportering av infrastrukturens verksamhet.
Följande nyckeltal ska återrapporteras till Vetenskapsrådet enligt instruktion. Observera att formuleringarna nedan är preliminära och att den exakta ordalydelsen kommer bestämmas innan första återrapporteringsdatumet. Nyckeltal markerade med * ska fördelas inom kategorierna män/kvinnor, nationella/internationella & interna/externa (med avseende på konsortium eller motsvarande), .
• Antal unika användare av infrastrukturen.* /obligatorisk/
• Antal unika användare per ämnesområden (ange SCB-koder på tresiffernivå). /obligatorisk/
• Antal anställda vid infrastrukturen fördelat på kvinnor respektive män. (nationella infrastrukturer)
• Antal unika användare som är akademiska forskare respektive övriga. /”Övriga” kan delas upp ytterligare i industriella/privata användare, landsting eller annan offentlig verksamhet. /
/obligatorisk/
• Antal unika användare per funktionalitet i infrastrukturen. /används vid behov om infrastrukturen tillhandahåller moduler/tjänster med vitt skilda funktioner/tillämpbart för NEAR först efter 5 år
• Xxxxx vetenskapliga artiklar och patent som infrastrukturen bidragit till. /om tillämpbart/
• Antal dataset som tagits fram vid infrastrukturen och som gjorts öppet tillgängliga (inklusive lista med unika identifierare för dataseten). /används vid behov/
• Antal ansökningar om tillgång till infrastrukturen, samt antal beviljade ansökningar.*
/obligatoriskt/
• Antal ansökningar om prover från infrastrukturen, samt antal utlämningar.* /om tillämpbart/
• Antal ansökningar om dataleverenser från infrastrukturen, samt antal utlämningar.* /om tillämpbart/
Ansökan
Bilaga 2
2017-03-06
Utkast Karolinska Institutet
Namn: Xxxxx Xxxxxxx-Xxxxxx Dr-examen: 1991-04-25 Födelsedatum: 19611009 Akademisk titel: Professor Xxx: Xxxxxx Xxxxxxxxxxxx: Ingen nuvarande arbetsgivare Medelsförvaltare: Karolinska Institutet Hemvist: NVS (Institutionen för neurobiologi, vårdvetenskap och samhälle) |
Utlysningsnamn: Forskningsinfrastruktur Infrastruktur av nationellt intresse 2017 Bidragsform: Forskningsinfrastruktur Sökt inriktning: Infrastruktur av nationellt intresse Ämnesområde utlysning: FI |
Projekttitel (svenska): NEAR: Nationell e-infrastruktur för forskning om åldrande i Sverige Projektstart: 2018-01-01 Projektslut: 2025-12-31 Sökt beredningsgrupp: FI-BU Klassificeringskod: 30502. Gerontologi, medicinsk/hälsovetenskaplig inriktning (Samhällsvetenskaplig inriktn.under 50999) Nyckelord: Aging, Epidemiology, Swedish databases, Prevention, Health |
År: 2018 2019 2020 2021 2022 2023 2024 2025 Belopp: 18 354 700 20 142 900 23 559 700 20 344 500 19 401 500 19 378 700 21 370 000 19 974 100 |
The following six Swedish universities are participating in the NEAR initiative.
Karolinska Institutet (KI). NEAR is coordinated by KI, one of the most prestigious medical universities in Europe. Aging is one of the profile research areas at KI, and eight databases included in NEAR are located there. Major resources for aging research available at the university are: 1) the Aging Research Center (ARC), established in 2000 as a collaboration between KI and Stockholm University; 2) the Swedish Dementia Registry (SveDem), a national quality register on dementia disorders started in 2007; and 3) the Strategic Research Area in Epidemiology (SfoEpi), supported by VR, an initiative to integrate the unique resources for epidemiological research available in Sweden.
Blekinge Institute of Technology (BTH). One database (SNAC-B) included in NEAR is located at BTH. BTH is among the world´s most outstanding higher education institutions within software engineering and sustainable development. Research is conducted in the fields of engineering, IT, spatial planning, industrial economics and health sciences. Distinguishing research areas in health sciences include aging and gero-technology.
Gothenburg University (GU). Two databases included in NEAR are located at GU. Several well- known research groups in the field of aging operate at GU, most of them participating in the Center for Aging and Health (AgeCap). AgeCap’s ultimate goal is to strengthen older people’s ability to make choices that improve their overall well-being and participation in society.
Jönköping University (JU). One database (GENDER) included in NEAR is located at JU, Institute of Gerontology. A valuable resource at JU is the Aging Research Network – Jönköping (ARN-J) that is a multidisciplinary research group that aims to increase knowledge and understanding of aging and the role of older people in society.
Lund University (LU). One database included in NEAR is located at LU. The valuable resources at LU include 1) the Center for Aging and Supportive Environments (CASE), a Forte center of excellence in research on aging that focuses on environments that support health, activity, and participation; 2) the VR-funded Swedish National Graduate School for Competitive Science on Aging and Health (SWEAH) with the goal is to provide a multidisciplinary learning environment; and 3) the SFO Epihealth center of excellence for epidemiological research.
Umeå University (UmU). Two databases included in NEAR are located at UmU, Betula and SHARE. One major resource at UmU is the Center for Demographic and Aging Research (CEDAR). Established in 2015, CEDAR is a multidisciplinary center for research on demographic changes and aging. CEDAR hosts large research programs (including a Linnaeus grant and Forte programs) and various population databases.
Infrastrukturens namn (svenska)*
NEAR: Nationell e-infrastruktur för forskning om åldrande i Sverige
Infrastrukturens namn (engelska)*
NEAR: The National E-infrastructure for Aging Research in Sweden
With this application, we seek support to build and run the National E-infrastructure for Aging Research (NEAR) after a 2-year planning phase supported by VR. Initially, we will integrate datasets from 15 major longitudinal, population-based projects on aging located at 6 Swedish universities. XXXX will empower aging research in Sweden and contribute to identifying sustainable intervention strategies for better health and care for older people. Implementation includes 7 modules: 1) organization, management, and policy; 2) building the technical platform;
3) database documentation; 4) data harmonization; 5) access procedures and user support; 6) database update and enrichment; and 7) promoting and expanding NEAR. Each module includes 2- 5 specific tasks whose deliverables, staff, and time plan are predefined. The added value of NEAR includes the broad, multidisciplinary research perspective that cannot be achieved with the individual databases; the increased sample size and variation, which enhance representativeness and generalizability; and a critical mass of data that opens new research avenues and supports innovation. The availability of such a large collection of medical and social data and the scientific excellence of the NEAR founders will reinforce the international profile of Swedish aging research, promote new multidisciplinary collaborations, and support the development of a new generation of well-qualified researchers in this expanding field.
Populärvetenskaplig beskrivning (svenska)*
Den demografiska utvecklingen mot en åldrande befolkning utgör en grundläggande förändring som kommer att medföra betydande utmaningar inom en rad olika samhällsfunktioner under 2000-talet. Sverige har idag en av världens äldsta befolkningar. En femtedel är över 65 år och drygt 5 procent är över 80 år. Andelen i riktigt hög ålder ökar i allt snabbare takt och i den åldersgruppen återfinns flest personer med kognitiva och fysiska funktionshinder. En åldrande befolkning leder även till ett ökat antal personer med kroniska sjukdomar, vilket i sin tur ökar behovet av insatser från samhället och familjen. Detta betonar behovet av att kartlägga effektiva och hållbara strategier för att uppnå både ett längre och ett friskare liv. Att identifiera tidigare biomedicinska, sociala och beteendemässiga faktorer för att förstå sambandet med kognitiva och fysiska funktionshinder senare i livet är således av yttersta vikt för att främja en komprimering av sjuklighet och funktionshinder i ett åldrande samhälle.
Sverige har sedan 1970-talet en tradition av att studera åldrandet och hälsa med hjälp av populationsbaserade studier och idag är Sverige internationellt framstående när det gäller bland annat forskning om demenssjukdomar. Den rådande kompetensen inom socialgerontologi, geriatrik, genetik, epidemiologi och folkhälsa tillsammans med tillgången till populationsbaserade studier skapar en högkvalitativ potential för att etablera en nationell infrastruktur för innovativ äldreforskning i Sverige.
Genom det tvååriga planeringsstödet från VR har vi nu möjlighet att ansöka om ekonomiskt stöd för att bygga och driva den Nationella E-infrastrukturen för äldreforskning (NEAR). Syftet är att främja och underlätta svensk äldreforskning, öka kvalitét och generaliserbarhet av forskningsresultat samt att intensifiera internationella samarbeten. Inledningsvis är vårt mål att integrera flera nationella longitudinella populationsbaserade projekt om åldrande och hälsa.
Följande kriterier ska uppfyllas för att få ingå i infrastrukturen: 1) Studiedesignen ska vara prospektiv och populationsbaserad, 2) studiepopulationens ålder ska i regel vara 50 år och äldre,
3) datainsamlingen ska ha godkänt etiskt beslut från den lokala etikprövningsnämnden och 4) projektets kvalitet ska garanteras genom att uppvisa forskningsresultat som ökar vår förståelse av åldrande, hälsa och vård av äldre personer. Idag är 15 databaser vid sex svenska universitet inkluderade i NEAR. Vår önskan är att inom en snar framtid göra det möjligt för ytterligare databaser att ansluta till NEAR.
NEAR kommer att bestå av sju moduler. 1) Organisation, ledning och policyutveckling 2) byggandet av den tekniska plattformen, 3) dokumentation av data, 4) harmonisering av data, 5) gemensamma regler och verktyg för tillgång till data och användarstöd, 6) uppdatering och komplettering av databaser och 7) förutsättningar för infrastrukturens expansion. För varje modul anger vi tre till fem specifika uppgifter, vad som kommer att levereras, ansvarig personal och tidsplan. NEAR kommer att ledas av en styrgrupp, en operativ grupp samt av ledningen för de lokala databaserna. Ansvariga har till uppgift att bestämma mål och prioriteringar, definiera databasinfrastrukturen, tillhandahålla lösningar för dataharmonisering och dokumentation av tillgänglig data. Infrastrukturens webbsida är aktiv (xxx.xxxx-xxxxx.xx) och ett nyhetsbrev planeras.
NEAR skapar särskilda förutsättningar för nya innovativa forskningsfrågor och tvärvetenskaplig forskning. Ett större studiepopulationsurval förbättrar representativiteten och generaliserbarheten samt bidrar med den datamängd som förutsätts för att stödja innovation. NEAR kommer att vara en rik dataresurs för forskning och utbildning inom äldreområdet som sträcker sig över en mängd vetenskaper såsom bland annat folkhälsa, geriatrisk epidemiologi, gerontologi, neurovetenskap, psykologi, socialt arbete, sociologi och vårdvetenskap. Tillgången till en infrastruktur med högkvalitativa uppgifter om både biomedicinska och sociala faktorer kommer att, tillsammans med den vetenskapliga kompetensen som grundarna av NEAR har, främja tvärvetenskapliga samarbeten och möjliggöra för utbildning och utveckling av en ny generation kvalificerade forskare inom området. Vidare bidrar NEAR till att den svenska äldreforskningens internationella profil och anseende bibehålls och stärks.
Medel söks för Nationell infrastruktur (Sverige)
Område/Infrastruktur*
Område: Infrastruktur för forskning som använder sig av individdatabaser inom medicin och samhällsvetenskap Infrastrukturer inom detta område: Utvärdering Genom Uppföljning, UGU; European social survey, ESS-S and ESS-ERIC; International Social Survey Program, ISSP; The Survey of Health, Ageing and Retirement in Europe, SHARE-S and SHARE-ERIC; Swedish Longitudinal Occupational Survey of Health, SLOSH; Svenska Mammografikohorten, SMC; The longitudinal Swedish national study on ageing and care in Kungsholmen, SNAC-K
Redogörelse för etiska överväganden*
We are fully aware that ethical and legal issues are extremely important in the implementation of NEAR, and these issues have been carefully discussed during the planning phase. Ethical and legal issues in the national infrastructure are complex because of the sensitive nature not only of the data itself and data collection, but also of data transfer and sharing among different owners and users in the implementation of NEAR.
The new data protection regulations in academic research in the EU are yet to be implemented nationally. The proposed act suggested in the investigation “Unik kunskap genom registerforskning: SOU 2014:45”, currently being processed, is also important for NEAR. These uncertainties mean that not all details regarding legal and ethical aspects of NEAR can be defined at this stage. We will prioritize the development of full policies on a broad range of ethical and legal issues relevant to the national infrastructure as part of NEAR's operational plan (see “NEAR- Description and Operationalization”). This task will be accomplished with the support of the Ethical Advisory Board that will follow all NEAR activities during, at minimum, the first eight years of the e-infrastructure.
At this stage, the following ethical issues related to data collection, integration, linkage, and access have been considered:
First, for a database to be part of NEAR, ethical approval for the original data collection must have been granted by a central or regional ethical review board (Dnrs and all ethical approval documents will be provided at the outset of the project), and informed consent (oral, written, or both) must have been collected from the participants or proxies prior to data collection.
Second, an infrastructure such as NEAR cannot be reviewed in accordance with the Swedish Ethical Review Act (2003:460); only the specific research projects that will be performed using the data in the infrastructure can be reviewed in this way. Thus, additional ethical approval will be requested from the appropriate ethical review boards (etikprövningsnämnd ) for each internal or external research project that will use NEAR data from the cohorts in the infrastructure.
Third, written data transfer agreements and data collector agreements (personuppgiftsbiträdesavtal) will be signed for all appropriate data transfers and sharing.
Fourth, the way we handle sensitive personal data is crucially important not only from ethical and legal perspectives, but also to maintaining and expanding our databases. The sustainability of the cohorts in NEAR relies on people’s willingness to participate in the studies, which in turn depends upon the confidence they have in our work. Thus, security measures will be taken to protect personal data. Special attention will be devoted to data transfer and sharing nationally and internationally, and all data will be pseudonymized by removing all identifiable personal information before the data are transferred and released for use. Data from individuals who are deceased will still be handled as “personal data”.
Fifth, we will also secure data storage into the overall data security and protection policy. Detailed measures and regulations will be fully discussed and developed.
Finally, all users of the infrastructure data will be required to follow the Ethical Principles for Medical Research Involving Human Subjects developed for the medical community by the World Medical Association (Declaration of Helsinki) and the ethical guidelines of the Swedish Council for Research in the Humanities and Social Sciences: the principles of autonomy and integrity, the rule of consent, and the use of research.
I projektet ingår hantering av persondata
Ja
I projektet ingår djurförsök
Nej
I projektet ingår humanförsök
Nej
NEAR: The National E-infrastructure for Aging Research in Sweden.
Scientific plan
1 Primary purpose and included databases
The primary purpose of our initiative is to build and run a National E-infrastructure for Aging Research (NEAR; xxxx://xxxx-xxxxx.xx/) by integrating the existing databases from 15 major population-based studies on health in aging in Sweden, thus facilitating aging research in Sweden, fostering international collaboration, and enhancing the quality of research and generalizability of research findings. Ultimately, by empowering aging research in Sweden, NEAR will contribute to identifying sustainable intervention strategies that will help us achieve better health and care for older people.
Why an infrastructure on aging research? The demographic transition toward an older population in the past half century poses tremendous long-term societal challenges in Sweden and globally. Sweden has one of the highest proportions of older people in the world: about one-fifth of our population is 65 years or older, and the oldest-old (age 85+) are the fastest growing segment of the population. Although we now live longer and healthier lives, the aging of the population is leading to an increasing number of people with chronic disorders and functional dependence, which greatly impacts families and societies. Understanding how social, biomedical, and behavioral factors relate to later-life health conditions is of utmost relevance when we aim to compress disability and morbidity into a short period toward the end of life. Such compression is crucial not only for individuals but also to reduce the economic and societal burden of late-life disability and morbidity.
Beginning as early as the 1970s, several population-based studies on health and aging were implemented in Sweden. Indeed, Sweden has a long tradition of community-based studies on aging and mental health and is one of the leaders in the research field of dementia and other mental disorders in older people worldwide. Sweden's high level of competence in social gerontology, geriatric epidemiology, public health, and other aging-related disciplines, together with the availability of numerous population-based studies, provides the ideal basis for establishing a national infrastructure like NEAR.
1.1 Databases included in NEAR (xxxx://xxxx-xxxxx.xx/Xxxxxxxxx.xxxx).
At the moment, NEAR consists of 15 databases, including three databases already supported by VR as national infrastructures (Table 1). All databases share the following characteristics:
• Data are derived from population-based longitudinal projects, well known nationally and internationally, which include more than 180,000 people over age 50;
• Participants are older adults who have been assessed by direct interview or/and clinical examination and followed up a minimum of seven years to a maximum of 40 years;
• All projects have received ethical approval at each phase of assessment as described in detail in the attachment on ethical considerations;
• The extraordinary number of studies (more than 500) derived from the databases have already generated relevant knowledge on health and health care in aging.
NEAR will be a dynamic infrastructure for the following reasons:
• It is based on ongoing exchanges with the local databases and with the external users;
• It will be constantly developed, as it is designed to be project-driven; and
• It will be enriched in the future by a) collection of new data in the ongoing included projects, b) incorporation of more datasets from other longitudinal studies, and c) linkage with registers such as clinical quality registers (SveDem, SeniorAlert), hospital-based registers (GEDOC), or national registers (the Swedish Prescribed Drug Register).
Table 1. Databases from the 15 population-based longitudinal studies included in NEAR
PI | Description |
L Nyberg Umeå University | Betula Project (xxxx://xxx.xxx.xxx.xx/xxxxxx/) aims to trace memory changes during adult life and old age (30+ years) and identify risk factors for cognitive decline and early preclinical signs of dementia. It started in 1988 with participants from Umeå, northern Sweden, who were examined every 5 years on 6 occasions [1]. N=4445; follow-up=30 years |
G Malmberg Umeå University | Survey of Health, Ageing and Retirement in Europe-Sweden (SHARE) (xxx.xxxxx-xxxxxxx.xxx) aims to analyze the interplay between economic, health, and social factors in shaping older people’s living conditions and health. Longitudinal surveys of 110,000 people aged 50+ from 21 European countries [2]. In Sweden, it included 3053 people followed up for 12 years. |
L Fratiglioni Karolinska Institutet | Kungsholmen Project (KP) (xxx.xxxxxxxxxxxxxxxxxx.xx) focused on the development and social consequences of dementing disorders. All registered inhabitants aged 75+ in Kungsholmen, Stockholm, were examined at baseline (1987-1989) and re-examined every 3 years until 2000 [3]. N=1810; follow-up=13 years |
X Xxxxxxxxxxx & A Wimo Karolinska Institutet | Swedish National study on Aging and Care in Kungsholmen (SNAC-K) (xxx.xxxx-x.xx) & Swedish National study on Aging and Care in Nordanstig (SNAC-N) (xxx.xxxxxxxxxxxxxx.xx). Kungsholmen and Nordanstig are two of the 4 centers included in a national project to improve health and care of adults 60+ years. They started 2001-2004 with medical, psychological, and social assessment of the participants who were followed with same protocol every 3-6 years [4]. N=~4500 and 766; follow-up=16 years |
Xxxxxxxxxxx & J Fritzell Karolinska Institutet | Swedish Panel Study of Living Conditions of the Oldest Old (XXXXXX) (xxx.xxxxxx.xx/xxxxx.xxx) aims to investigate the impact of early and midlife factors on late-life health. Surveys on national samples in 1992, 2002, 2004, 2011, and 2014 included a variety of living conditions and health indicators. Linkage with the Swedish Level of Living Survey provides over 45 years of longitudinal data [5]. N=~3700; follow-up=over 40 years |
NL Pedersen Karolinska Institutet | Screening Across the Lifespan of Twins (SALT) (xxxx://xx.xx/xx/xxxxxxxx/xxx-xxxxxxx-xxxx-xxxxxxxx) & Swedish Adoption /Twin Study of Aging (SATSA) (xxx.xxxxxxxxx-xxxxxxxx.xxx/xxxx/xxxxx/xxxxx). Both aim to study the origins of individual differences in aging, including environmental and genetic factors. SALT includes ~45,000 twins aged 40+ identified via the Swedish Twin Registry, screened 1998-2002 and followed up in 2005-2008. SATSA includes 2018 twins aged 50+ followed every 3 years since 1984 [6]. |
A Wolk Karolinska Institutet | Swedish Mammography Cohort study (SMC) (xxxx://xx.xx/xx/xxx/xxxx-xx-xxxxxxxxxxx-xxxxxxxxxxxx): a female cohort aged 40+ (n=~61,400) started in 1987 in central Sweden and followed in 1997 & 2008. Cohort of Swedish Men study (COSM): a male cohort aged 55+ (~50000) started in 1997 in central Sweden and followed in 2008. SMC and COSM aim to study the association between lifestyle, genetic factors, morbidity, and mortality in middle-aged and elderly people [7]. |
B Xxxxxxxxx Gothenburg University | Origins of variance in the Old-Old (OCTO-Twin) (xxxx://xx.xx/xx/xxx/xxxx-xxxx) aims to explore genetic and environmental bases of heterogeneity in the oldest-old. 351 twin pairs aged 79-98 from the Swedish Twin Registry, were clinically assessed on 5 occasions at 2-year intervals from 1991- 1994 to 1999-2002 [8]. Follow-up=10 years |
I Skoog Gothenburg University | Gothenburg Population Studies (xxxx://xxxxxx.xx.xx/xxxxxxx/xxxxxxxx) aim to explore interplay between genetic, biological, and psychosocial factors and their influence on mental health in old age. The cohorts are representative of older populations from young-old to oldest-old (H70, H85, H95+) in Gothenburg [9]. N=~2400; follow-up=40+ years |
AD Aslan Jönköping University | Gender Differences in Health Behaviour and Health among Elderly (GENDER) (www.maelstrom- xxxxxxxx.xxx/xxxx/xxxxx/xxxxxx) aims to study the origins of individual differences of unlike-sex twin pairs in the aging process. 249 unlike-sex twin pairs born in 1906-1925 in Sweden were evaluated in 1995-1997, followed by two additional in-person waves at 4-year intervals [10]. |
J Berglund Blekinge I. Technology | Swedish National study on Aging and Care in Blekinge (SNAC-B) (xxxx://xxxxxxxxxx.xx/xxxx). Blekinge is one of the 4 centers included in the national SNAC project started 2001-2004 in southern Sweden [4]. N=1402; follow-up=16 years |
S Elmståhl Lund University | Swedish National study on Aging and Care in Skåne (SNAC-S) (xxx.xxx.xx.xx/xxxxxxxxxxxx/ geriatrik/gott_aaldrande_i_skaane). Skåne is one of the 4 centers included in SNAC. SNAC-S started 2001-2004 in southern Sweden [4]. N=2391; follow-up=16 years |
2 Aging research: Status of the field and future challenges
Aging is a life-long process of progressive changes. The functional capacity of biological system peaks in early adulthood and then progressively declines, but strong evidence indicates that health and functioning status in older people are largely determined by lifelong exposures and actions. Decades of research, including studies using the NEAR databases (Table 2), have led to three major contributions that also represent the three major challenges of the field in the coming decades. With NEAR, we can address these challenges with high-quality data of unique depth and breadth.
Table 2. Major scientific contributions from the participating databases
Betula Project: This longitudinal project revealed a markedly later onset of age-related memory change than that suggested by cross-sectional data. It also demonstrated great heterogeneity in memory-aging profiles and linked such variability to genetic, lifestyle, and brain characteristics [1, 11].
Gothenburg Population Studies (H70, H85 and H95+): These studies provided pioneering evidence linking vascular risk factors to vascular dementia and Alzheimer’s disease. A further novel contribution is a better understanding of the role of midlife factors (obesity, hypertension, and high cholesterol) in late-life health conditions such as stroke, dementia, and depression [9, 12].
KP: This project uncovered the relevance of psychosocial factors in dementia, showing that a socially, physically, and mentally active lifestyle together with low vascular burden partly counteracts the genetic risk for dementia. These factors prolonged life by 5 years in people aged 75+ and protected people from multimorbidity and disability [3, 13].
OCTO-Twin Study: This project has shown the relevance of preserved cognitive function for survival, well-being, and physical capacity in the old-old (age 80+). Although the effect of genetic background is strong, even identical twins age differently [14].
SALT: The project is one of the few in the world that could quantify the genetic and environmental influences in 1) common chronic disorders of older people and 2) individual changes in physical and cognitive functioning through the lifespan. XXXX also made pioneering contributions on the relevance of diabetes and inflammation in neurodegeneration [15].
SATSA: Data from this dataset have greatly contributed to our understanding of how genetic and environmental factors work together to influence physical and mental health [16].
SHARE-Sweden: This project has explored the consequences of different welfare regimes on aging, the role of informal and formal care across Europe, feelings of loneliness in different European regions, and impact of physical activities on depression in older people [2].
SMC and COSM: The greatest contributions of COSM and SMC have been in the field of nutrition and cancer, especially breast and prostate cancer. As the cohorts aged, we are able to investigate physical activity and diet in relation to health and survival of older people [7, 17].
SNAC: SNAC-K showed that dementia incidence and disability have declined in the last 2 decades.
SNAC-B revealed the importance of dental health in older people and its relationship with cognition. SNAC-S showed the need for different cut-offs in several biological tests in 70+ old people. The estimated costs of formal and informal care of people with dementia from SNAC-N have been used by WHO and the Swedish National Board of Health and Welfare. Finally, several studies from SNAC-K and SNAC-N have shown the extent of inappropriate drug use and inequalities in drug treatment related to socioeconomic status in older adults [18, 19].
XXXXXX: Studies with XXXXXX have shed light on 1) the relevance of living conditions and family connections to well-being and healthy aging and 2) health inequality in older people by gender, education, and socioeconomic position in Sweden. Research on health trends and midlife determinants has underlined the need for using multiple health indictors and a life- course approach [5, 20].
Challenge 1: Health in aging is a complex, multidimensional, dynamic process. Developing a disease may greatly affect health of older people, but measures of morbidity alone are insufficient to capture the complexity of health; functioning must also be taken into account. Rather than absence of diseases, health is a state of social, physical, and psychological well-being that allows people to live actively in accordance with their needs and preferences. However, our current knowledge about health in aging concerns only single dimensions of health and interpersonal differences confound our understanding of intrapersonal changes. Little is known about variations in individual health. Health trajectories can significantly complement the conventional measures of health outcomes by providing information related to how health evolves over time. NEAR has the potential to fill this gap.
Challenge 2: Multidomain determinants of health in aging. Poor health is not a necessary consequence of surviving to older age. A number of contextual, biographical, and biological drivers lead to important variations in older people´s health trajectories, such as exercise, nutrition, social engagement and support, stress levels, occupation experiences, and allostatic mediators. Strong evidence supports the hypothesis that single or aggregated determinants from biomedical, environmental (social and physical) and psychological domains impact health in old age, but we still lack evidence on the interplay among the domains. XXXX provides a unique opportunity to explore health of the older people in relation to various determinants, their interaction and changes with time.
Challenge 3: Lifelong experiences and trajectories. We have ample evidence that as we age, our health status and risks for diseases are the outcomes of different life events starting at gestation and involving other life periods such childhood, adolescence, and adulthood. The life course approach has become mainstream in social sciences and epidemiology, but robust knowledge on the interrelationships between social and biological factors over the life course is still largely wanting. NEAR has the potential to provide major contributions to this topic.
3 NEAR: NATIONAL INTEREST AND ADDED VALUE
NEAR fulfills the 6 criteria established by VR to define an infrastructure of national interest:
• Be of broad national interest. Sweden has one of the oldest populations in the world, which underscores the urgent need for investing in aging research. NEAR will focus on aging, health, and care to identify intervention strategies for living longer and healthier lives.
• Provide conditions for world-leading aging research. A multidisciplinary perspective is needed in aging research. By harmonizing 15 datasets from medical and social fields, NEAR will include information on social gerontology, public health, biomedicine, and care science. The availability of multidisciplinary data in such a large population makes NEAR unique.
• Be exploited by several research teams or by users involved in high-quality research projects. Our current experience from the individual databases suggests that NEAR will be used by national and international researchers, health care professionals, government agencies, the industrial sector, and international organizations, as the infrastructure can provide unique information for aging research, policy and development, and innovation.
• Be of a large sample size and national coverage of older populations that make it impossible for individual research teams to manage. NEAR includes older populations from almost all parts of Sweden. The large sample size allows carrying out subgroup analyses, provides nationally representative data, and supports methods development.
• Be subject to a long-term plan. Long-term planning includes continuous expansion by adding new data collected in the individual databases, including additional databases, linking NEAR with various registers, and interacting with related international
infrastructures. We will be able to trace societal changes, time trends, and generational differences in health conditions in older population.
• Be open and easily accessible to researchers, industry, and other users, and be subject to an accessibility plan. It is in our interest to make NEAR available to researchers and other users once the infrastructure is established and we will develop detailed policy regarding accessibility, rules, and procedures for using NEAR. We aim to find solutions to facilitate and guarantee open access for all users while taking the ethical and legal aspects of sensitive personal data into account.
3.1 Added value
• The infrastructure will allow researchers from multiple disciplines, including social gerontology, biomedicine, public health, epidemiology, psychology, health economics, and care science to study a broad range of issues related to health in aging. This broad range of data cannot otherwise be provided by any of the individual databases.
• NEAR will promote not only data sharing, but most importantly, the sharing of different competences from medical, psychological, and social fields. This will be crucial to developing a new generation of highly and uniquely qualified researchers and to creating multidisciplinary networks.
• Specific research questions (e.g., on the societal burden and time trends of diseases, health determinants, and health care-related issues) can be addressed in nationally representative samples, and the generalizability of findings will be greatly improved.
• The inclusion of databases such as SHARE provides the opportunity to compare findings in European countries with different institutional and socio-cultural contexts.
• NEAR will benefit aging research by substantially increasing sample size and statistical power. Sample size and power are major limitations of most studies on individual-based care or gene-environment interactions for various health outcomes in old age.
• Along with the increased power, NEAR’s nationwide coverage will allow researchers to capture the diversity of health in older adults in Sweden with regard to gender, education, socioeconomic position, living areas, living conditions, and earlier life events.
• Access to multidisciplinary data will make the field of aging research more attractive not only to researchers already working in the field, but also to clinical and basic scientists. In Sweden, only a limited number of basic scientists now work in aging research.
• NEAR will strengthen individual research groups’ ability to find international collaborators and to recruit students and researchers from abroad.
• By ensuring the future development of aging research in Sweden and providing a critical mass of data, NEAR will further consolidate Sweden’s leading international position in the research area of aging, health, and care.
4 Scientific objectives and planned projects
Our vision is that NEAR will provide important contributions to our understanding of social, biomedical, and psychological aspects of the aging process in relation to people’s social and physical contexts across the entire lifespan. We can achieve this goal by coordinating the existing research on aging, health, and social care at the national level; integrating the databases already available in the various geographic areas and disciplines; and facilitating the use of such integrated, multidisciplinary information through the improved access provided by the new national infrastructure NEAR.
Scientific objectives. At least 5 scientific objectives can be achieved in NEAR’s first 8 years:
1. Provide high-quality database resources for investigating determinants, pathways, and underlying biological mechanisms of common diseases (e.g., cardiovascular disease,
stroke, and dementia) and health conditions (e.g., multimorbidity, frailty, cognitive decline, and functional dependence) in older people;
2. Provide high-quality database resources for investigating public health-related issues in aging, such as national burdens and time trends of common diseases and health conditions;
3. Provide data for assessing and planning health care for older people by encouraging linkage to other registries;
4. Provide scientific evidence to design intervention strategies to improve health, medical, and social care and quality of life for older people; and
5. Provide reliable data for addressing issues of social inequality in aging and health.
4.1 Five research projects
In line with the five objectives, we have identified five research projects for which NEAR can provide the necessary data starting in year 3:
Project I: Exploring health trajectories in aging to better identify people at higher risk of severe negative outcomes and care services utilization. To achieve not only longer but also healthier lives, we need to assess individuals’ health holistically going beyond the simple absence of diseases and trace their trajectories of health and functioning. NEAR will give us the opportunity to 1) include clinical diagnoses, physical and cognitive dysfunction, and disability and 2) monitor health changes at the individual level. Deterioration in older people’s health may follow different trajectories from first biological changes to disease onset, functional loss, disability, and ultimately, death. The integration of several datasets will give us the opportunity to identify new pathways to healthier lives in old age.
Project II: The complex interrelationship between psychiatric and neurodegenerative disorders in older adults. Neuropsychiatric disorders are common in older adults, yet their effects on aging-related disorders are not well understood. Both sleep disturbance and depression could be risk factors for or early symptoms of cognitive decline and dementia or may interact with genetic factors (e.g., APOE) to prompt clinical expression of neurodegenerative disorders. NEAR will provide rich information on sleep and depression along with repeated measures of cognition and rigorous diagnosis of dementia over a long follow-up period. The enhanced power of the combined datasets will give us the ability to investigate how depression and sleep disturbances are related to dementia subtypes (even less common ones), and whether these psychiatric conditions are potential surrogate markers for preclinical stages of neurodegenerative diseases.
Project III: Not only in the genes. Gene-environment interplay explains why older adults age differently. Healthy behaviors and stimulating lifestyles may counteract the deleterious effects of genetic susceptibility and aging-related brain lesions. People with high brain reserve due to lifelong exposure to several protective factors have lower risk of cognitive decline and dementia than those with lower brain reserve despite similar levels of vascular and amyloid burden. Similarly, genetic vulnerabilities interact with a variety of environmental exposures to contribute to individual differences in aging. With NEAR, we can 1) explore how physical and mental health is affected by the interplay of genes and environment, 2) identify genetic vulnerabilities whose detrimental effects are preventable when combined with a particular environmental exposure, and 3) identify those who may potentially benefit from intervention.
Project IV: Identification of neuroimaging biomarkers in brain aging. The brain- maintenance theory states that relative lack of brain pathology is the primary determinant of successful memory aging. Brain maintenance can be measured at different “levels”, including the integrity of brain grey and white matter with magnetic resonance imaging (MRI). Several databases in NEAR include detailed measures of memory and MRI, which offers a unique opportunity to test key predictors of the brain-maintenance theory and many other questions
on the relationship between brain integrity and cognitive function. The increased power provided by NEAR enables us to explore the role of genes and lifestyles.
Project V: Life course dynamics leading to social inequalities in health at old age. Inequalities in health between older people of different socioeconomic position (e.g., education, occupation, and income) are large and often grow over time. Differences in disability-free life expectancy are even larger than differences in life expectancy. Although such disparities are found in almost all countries, an intriguing question is the extent to which welfare policies influence these differences. Thanks to the inclusion of SHARE in NEAR, we will be able to carry out cross-cultural studies on older adults in Europe, relating health conditions to socioeconomic status and welfare policies. Finally, XXXX will not only examine how events and social circumstances over the life course are interrelated and lead to health inequalities in old age, but also specifically focus on social-biological transitions.
5 Potential users
We will develop full policies for sharing NEAR data with internal and external users while taking into account not only quality of the proposals but also ethical and legal issues due to the presence of sensitive personal data in our datasets (see attachment “NEAR: Description and Operationalization”). NEAR will be a unique data resource for numerous academic and non-academic users from Sweden and abroad. We expect the following users:
• National users. NEAR can be used by researchers to investigate medical and social issues related to aging, by students for their master’s and PhD projects, by industrial actors for designing and developing medical and health care devices, and by health and social care organizations for planning and improving care services.
• International users. In Europe, NEAR can be a useful resource for graduate programs such as the summer school on epidemiological methods organized annually by Harvard University and KI. Furthermore, several participating datasets are already included in international multicenter studies or consortia (see “NEAR: Description and Operationalization”). NEAR will further support and facilitate these international exchanges. Finally, researchers and health professionals from North America and the Asia- Pacific region (Japan, China, and Australia) have already expressed interest in Swedish aging data for cross-cultural comparisons.
• Government agencies. National data are critically important for assessing and monitoring the health and care needs of the older population. NEAR can be used to guide resource allocation, plan the organization of health care, develop public health policies, and optimize health care and social services.
• International organizations. International professional organizations such as WHO, the World Stroke Organization, and Alzheimer’s Disease International will also be interested in using NEAR to help develop global policies and guidelines.
• Industry and other private organizations. Several actors in the private sector, both non- profit organizations and businesses, are becoming increasingly interested in aging. The information available in NEAR will help them develop new services (social innovation) and products that can help older people achieve healthier lives.
5.1 Expected number of users and their research fields
It is difficult to estimate an exact number of future users of NEAR. On the basis of the current situation, we anticipate that researchers from multiple research fields will take advantage of the infrastructure: public health and epidemiology, gerontology, geriatric medicine, social science, psychology, care science, neuroscience, and genetics. One way to estimate the number of potential users is via the use of the databases included in NEAR. They are currently used by various groups for research, education, and policy development and by
international partners as part of national and international consortia. The databases are involved in over 20 international consortia, and used by ~100 academic institutions, and ~20 non-academic institutions.
6 Relevance in the short and long term
Scientific relevance. The outstanding scientific track records of the participating PIs guarantee that the new infrastructure will be of high scientific caliber. Their diverse backgrounds provide the multidisciplinary perspective needed to ensure integrated research and high-impact findings. From a public health perspective, NEAR will contribute to identifying strategies to delay the onset of chronic conditions (e.g., multimorbidity, dementia, and disability) and mitigate their consequences. It has the potential to identify biological markers for early detection of diseases common among older adults, which can lead to early intervention and effective treatments. From a clinical point of view, research using NEAR will provide evidence to improve current guidelines for clinical practice. From a social care perspective, research derived from NEAR will facilitate the development of person-centered care and the integration of medical and social care services.
Significance for the scientific field in the long term. The scientific relevance of NEAR will increase as data from new follow-ups of the participating cohorts as well as new cohorts are added. Also, data harmonization will enhance the quality, accessibility, and usefulness of the data, which will lead to new research avenues, new analytical approaches, and innovative findings. The sample size in NEAR will be large enough to incentivize and facilitate the development of new methods for data collection using modern IT applications.
Societal relevance. WHO and the G8 industrialized nations have identified dementia and disability as a global public health priority. In line with their recommendations, NEAR seeks to identify intervention strategies to delay onset and progression of these disorders to help reduce their societal burden. In addition, NEAR will enable us to quantify the future economic and societal burden of age-related disorders and provide evidence for policymakers to better allocate resources and optimize care.
Relevance for national and international innovation. NEAR has great potential to contribute to innovation by enhancing our knowledge and its implementation in the public health, clinical, and private sectors. It can contribute to social innovation by providing scientific evidence regarding the integrated delivery of care services. NEAR will give us the opportunity to develop new biomarkers and treatments for specific diseases that can lead to clinically relevant innovations. Additionally, NEAR can be used to develop and validate specific applications to predict and monitor not only disorders such as dementia and multimorbidity but also drug treatments. These web-based tools can be used by patients, thus enhancing people’s participation in health care, from prevention to long-term care and rehabilitation.
Contribution to competence development. The NEAR co-founders are all well-known researchers in the field of aging who come from different backgrounds and are active at six major universities in Sweden. This diversity provides the inspiring and interactive environment necessary to generate novel contributions and stimulate future research. NEAR will provide a platform for scientific exchange and communication among PhD students, postdocs, and junior researchers, and thus help educate and train younger generations of aging researchers in Sweden. Via their collaboration with the National Graduate School for Aging Research (SWEAH) at Lund University (already supported by VR), the NEAR co-founders will develop a plan for using the infrastructure in education.
7 References. See attached file-Key references
NEAR: The National E-infrastructure for Aging Research in Sweden
Description and operationalization
As reported in the scientific plan, our ultimate goal is to improve the health, care, and well- being of older people by optimizing a national integration of the major Swedish longitudinal, population-based projects on the health and care of older people. The new National E- infrastructure for Aging Research (NEAR) will initially include 15 databases derived from longitudinal cohort studies in different geographical areas in Sweden and currently available at six universities. NEAR will facilitate the use of this existing large-scale collection of medical and social data by improving access and harmonizing the data. This in turn will enhance the quality and generalizability of aging research in Sweden, promote new national and international collaboration, reinforce the international profile of Swedish aging research, and support the development of a new generation of qualified researchers.
To achieve these aims, we propose the 8-year plan described in the following seven modules:
Module 1. Creating an organization that will efficiently steer NEAR and ensure the direct participation of all the databases involved.
Module 2. Building a national database with a dynamic design and an architecture that ensures data quality by preserving the autonomy and independence of the local projects. An electronic platform will run the network interface to receive queries, aggregate and distribute data, and maintain centralized logs of NEAR usage.
Module 3. Documenting the baseline and follow-up information collected in the 15 projects, including data collection procedures, coding, and cleaning.
Module 4. Harmonizing data from the 15 datasets, which cover multidimensional medical, biological, social, and environmental information.
Module 5. Facilitating access to and pooling of the population-based datasets, which will increase the number of national and international users. This also includes helping users conduct meta-analyses or other integrated methods when harmonization is problematic.
Module 6. Maintaining and complementing the databases with follow-up data and enriching the existing databases by collecting new data.
Module 7. Expanding NEAR by linking it to other registers, including other Swedish population-based projects, and participating in international consortia.
1 Organization and leadership
NEAR is located at the Aging Research Center (ARC), NVS department, Karolinska Institutet (KI). NEAR is led by a Steering Board (SB) appointed by the six members of the consortium (KI; the universities of Umeå, Jönköping, Gothenburg, and Lund; and the Blekinge Institute of Technology). All the activities will be carried out by the Operational Group (OG) in collaboration with the local NEAR databases (Figure 1).
The SB includes one representative for each of the NEAR databases: X Xxxxxxxxxxx (chair); X Xxxxxxxx, X Xxxxxxxx, A Wolk, and A Xxxx from KI; X Xxxxxxxx and X Xxxxxx from Umeå University; AD Aslan from Jönköping University; I Xxxxx and X Xxxxxxxxx from Gothenburg University; S Elmståhl from Lund University; and XX Xxxxxxxx from the Blekinge Institute of Technology. The SB will determine NEAR policies and guarantee that the infrastructure is developed and run in line with the goals and values expressed in the application. The SB will establish the OG, whose members will be appointed by KI following the standard recruitment process. The SB will support the OG, which will implement NEAR policies and assist in reviewing user applications in case of controversy.
The Advisory Boards (ABs) include a) a Societal AB that will oversee the development, implementation, and evaluation of NEAR activities with regard to societal needs; b) a
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Scientific AB that will help the SB formulate its scientific and strategic organization to ensure high quality research and facilitate, expand, and reinforce the international profile of NEAR; and c) an Ethical AB that will help the SB fulfill ethical requirements. The SB will appoint the members of the ABs. The ABs and SB will meet biennially.
Figure 1. Organizational structure of NEAR. Local databases: for abbreviations see Table 1 in the Scientific Plan. Darker color indicates those projects whose follow-up is completed.
The OG will support the SB by establishing objectives, allocating resources, and developing the strategies and policies needed to start and run NEAR. The OG will also implement the policies formulated by the SB. The OG consists of:
• A coordinator (70% the first 4 years, then 50%) who organizes the OG’s activities, communication between the SB and the OG, and communication between the OG and the local database managers. During the 2016-17 coordination phase, X Xxxxxxx, who has a background in engineering and is a PhD student at ARC, has acted as coordinator;
• A data-use supervisor (X Xxxxxxx, PhD in aging research; 50% the first 4 years, then 30%), in charge of developing the user policy for NEAR (to be approved by the SB). She will support the coordinator in finalizing documentation of the databases (Module 3) and initial harmonization (Module 4). When NEAR is established, she will review the quality, feasibility, and ethics of the projects submitted by NEAR users and obtain permission from the local databases to provide data as requested by the users;
• An information technology (IT) manager (100%), who will implement the e-infrastructure and the data access. The IT manager will be responsible for all the IT needs;
• A database manager (100%) who supports the local databases that do not have a database manager and interacts with the other local database managers to finalize documentation and harmonization;
• A communicator (100%) who develops and updates the NEAR web interface; writes reports on NEAR activities; and organizes meetings, workshops, and educational events to facilitate the use and expansion of NEAR.
Local databases. The principal investigator (PI) of each longitudinal project, together with their database managers, will be responsible for maintaining, upgrading, and enriching the databases with the same high quality of documentation and data collection undertaken prior to
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the creation of NEAR. Three of the 15 Swedish databases included in NEAR belong to infrastructures already selected by the Swedish Research Council (VR) as infrastructures of national interest (SHARE-Sweden, SMC, and SNAC-K). The local databases included in NEAR are shown in Figure 1 and briefly described in Table 1 in the Scientific Plan.
2 Planned Activities
The planned activities will achieve the major objectives of NEAR, integrating the local databases in an efficient way while retaining their strength and data quality. The added value of NEAR is described in the Scientific Plan.
Overview
The main frame of NEAR architecture (Figure 2) is designed to meet the following requirements: 1) maintain high data quality by creating a dynamic database architecture in which the original data remain at the local centers where they have been and will be collected;
2) create a single network portal to receive and distribute queries, aggregate and distribute data, and maintain centralized logs of users; and 3) promote NEAR by increasing the number of national and international users.
The OG will coordinate the interface between NEAR databases and the users. The primary data will be stored in the local databases and pooled by the OG database manager only after request and local database approval. The amount of extra memory allocation needed in NEAR will be limited and depend on the number of user requests, as the data are kept centrally only for harmonization. Copies of the harmonization algorithm will be stored centrally.
Figure 2. Architecture of the NEAR e-infrastructure.
Figure 2 shows the procedure for obtaining data from NEAR, which includes the following steps: 1) The user selects the variables from the e-codebook on the NEAR web interface.
Users will be able to sort variables by subject, study type, and other categories and to select the list of variables needed. They will be able to select variables pertaining to a specific subpopulation (i.e., people living in the community). The list of selected variables is temporarily stored on the website. 2) The user requests the data (blue arrow in Figure 2) by entering information about co-applicants and their affiliations, research project title, ethical permission details, and research plan. 3) The data-use supervisor reviews the request to verify that the application is complete, relevant, feasible, and ethical. 4) The PIs of the local databases approve the request (green arrow in Figure 2). 5) The database manager creates a specific dataset that includes the variables from the local databases (red arrow). 6) The variables are harmonized by the NEAR coordinator and database manager (if not previously harmonized). 7) The user accesses the final dataset via data transfer or remote use (red arrow in Figure 2). The user can track the status of his/her request throughout the process.
To increase the number of NEAR users, the OG will further develop NEAR’s existing website (xxx.xxxx-xxxxx.xx). All information the external users need will be posted on the website,
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including a) organizational structure and financial supporters of NEAR, b) description of the longitudinal projects included in NEAR with links to their websites, and c) an interactive e- codebook, where information about the variables is presented in the simplest possible configuration and additional information is available through expandable menus.
Use policy
It is our policy and in our interest to make the NEAR database available to all researchers once data collection and processing are concluded. The data are open to other users, too, if ethical and legal requirements are fulfilled. Users can be from Sweden or from abroad.
Availability of data. The SB will write a policy that will be available on our homepage (xxx.xxxx-xxxxx.xx). The policy will take into account the purpose of the data request (scientific, public health, innovation), the qualifications of the user, the quality and feasibility of the research plan, and approval by a Swedish ethical committee.
User support. Potential users will receive up-to-date information about NEAR.
• The NEAR Newsletter will target mainly researchers, geriatricians, and clinical staff working with older people as well as policy makers at the municipal and county levels. The newsletter will report new developments and most relevant findings derived from NEAR;
• NEAR Workshops will provide an open forum to which all centers and NEAR users will be invited to present results and discuss methods related to longitudinal population-based studies. The groups will also discuss pertinent topics such as previous data collection, methods of achieving high participation, and their experiences as NEAR users;
• The NEAR homepage will provide information to the scientific community. Here, researchers, external collaborators, and current and potential users can easily find information on NEAR data (cohorts included in the e-infrastructure, codebooks, and the variable list) and use policy. The forms (available in English and Swedish) needed to apply for data will be available on the homepage, as will a list of articles in scientific journals, book chapters, and public health documents based on NEAR data;
• Training and user support. The OG will support and guide the users throughout the whole process of data pooling. Once a year, the OG will organize a NEAR Day for users to optimize the use of the infrastructure.
Collaboration with other large database infrastructures
All local databases already collaborate extensively with national and international consortia. NEAR will take advantage of the existing networks to open new collaborations beneficial to all members of the consortia. Below is a selection of current collaborations between one or more NEAR databases and other large infrastructures.
National level
SHARE-Sweden, SMC, and SNAC-K, three of the databases in NEAR, are already supported by VR as infrastructures of national relevance. This means that NEAR is an initiative devoted to integrating highly relevant infrastructures;
SALT, SATSA, OCTO-TWIN, and GENDER, four other databases included in NEAR, derive from the National Twin Register;
XXXXXX is a subsample of a larger nationally representative survey of the total adult population in Sweden-the Swedish Level of Living Survey (LNU). LNU is one of the longest longitudinal studies in the world. It began in 1968 and, with its subsequent waves, provides multidimensional, longitudinal data on individuals over nearly five decades.
International level
• In the Nordic countries, we have already established contact with the large Icelandic Age, Gene/Environment Susceptibility (AGES)-Reykjavik Study and other large Finnish cohorts.
• In Europe, at least one of the NEAR databases collaborates with: a) the English Longitudinal Study of Ageing (XXXX); b) the European Social Survey (ESS) and International Social Survey Programme; c) 21st Century EURODEM, a working group on neurodegeneration with 8 participating EU countries; d) the European Study of Cohorts for Air Pollution Effects (ESCAPE), which involves more than 30 EU cohort studies and investigates the effects of air pollution on health; e) the European database PERADES: Defining Genetic and Polygenic Risk for Alzheimer Disease; f) GEnetics of Healthy Aging (GEHA), which aims to identify genes involved in healthy aging and longevity; g) the Psychiatric Genomics Consortium (PGC2), which conducts meta- and mega-analyses of genome-wide genomic data on psychiatric disorders; h) the Enhancing NeuroImaging Genetics through Meta-Analysis (ENIGMA) Consortium; i) Waist Circumference and Mortality – Natl. Institute for Public Health and the Environment, the Netherlands, which includes 29 cohorts and more than 58,000 older people; j) multiple consortia in cancer research, including EPIC, which recently started a research line on aging; and k) NorCanTwin and the Consortium on Interplay of Genes and Environment across Multiple Studies, which include all the European twin registries.
• Outside Europe: a) Several NEAR databases are affiliated with the Integrative Analysis of Longitudinal Studies of Aging (IALSA), whose aim is to evaluate the reproducibility of results from longitudinal and life course studies; b) the International Consortium of Centenarian-Dementia studies, which includes studies from Europe and the United States;
c) SHARE-Sweden is part of the large European SHARE that in 2011 became a European Research Infrastructure Consortium (XXXX), which extends our international collaboration beyond SHARE-Europe since comparable surveys also exist in the United States, South Korea, and China; and finally, d) some databases are part of the WHO Study on Aging and Global Health.
3 Construction, development, and use of NEAR by module
The full implementation of NEAR is divided into seven modules that define the activities needed to develop and run the e-infrastructure envisioned in Figure 2. Each module includes several tasks, requires staff, and needs a specific budget. The timeline for the operationalization of the modules is reported in Figures 3 and 4.
Module 1. Organization, management, and policy in NEAR: four tasks
Task 1. Deliveries: Organization. Responsible: SB’s members. Time: Feb-June 2018.
The SB’s members are listed on page 1 and in Figure 1. The SB will finalize the organizational structure of NEAR by appointing the AB’s members and recruiting the OG’s staff. The NEAR coordinator and the data-use supervisor have been identified. The database manager, IT manager, and communicator will be recruited. The IT and database managers should a) be familiar with various database program languages, b) understand computer programming, c) have experience working with a variety of statistical software, d) have experience with database management, and e) be familiar with problems of network security. The communicator should a) have experience in administering complex projects, and b) understand computer programming and html/webpage creation.
Task 2. Deliveries: NEAR policies. Responsible: SB’s members. Time: Feb-June 2018. The SB will outline the policies that will form the backbone of the entire infrastructure. The
SB’s members will meet in person and via tele-conferences to define the policies. The policies will regulate the creation of a flexible and dynamic infrastructure that can be run easily and efficiently while maintaining constant control of quality and ethics. The aim is to ensure scientific integrity, transparency, accountability, and stewardship without limiting NEAR use, innovation activities, translational research, new collaborations, or integration with other
infrastructures. The policies will be used by the OG and local databases when they create and maintain NEAR.
Task 3. Deliveries: NEAR architecture. Responsible: SB’s members. Time: Jan-Mar 2019. The SB will review, finalize, and approve the NEAR architecture (Figure 2) proposed by the OG as described in Module 2.
Task 4. Deliveries: NEAR updates. Responsible: SB & AB’s members. Time: whole period. The SB will meet twice a year. In 2018, the SB will meet the EAB to discuss any ethical requirements that must be met before implementing NEAR, and in particular, before creating the data access procedures. Starting in 2019, the SB will hold yearly meetings with the ScAB and the SoAB.
Module 2. Building the architecture and the technical platform of NEAR: four tasks Task 1. Deliveries: contacts with external supporters. Responsible: NEAR coordinator. Time:
Jan-May 2018.
The IT manager, database manager, and NEAR coordinator will meet representatives of the external infrastructures that will provide technical support during NEAR implementation. Task 2. Deliveries: Design of NEAR architecture. Responsible: OG. Time: Jul-Dec 2018. To implement the architecture depicted in Figure 2, the OG will evaluate how to achieve compatibility across the 15 datasets. The IT and database managers and the NEAR
coordinator will ascertain the differences in data storage methods, variable identification, and coding at the participating centers. Specifically, the OG will a) ensure that all participating centers have compatible hardware and software, b) evaluate the security requirements at each site to determine the steps needed for data transfer between the individual centers and the database management group, c) explore other steps needed to establish a simple and efficient Internet-based meta-database, and d) consult with local database managers during the development of the e-codebook. At the same time, the OG will design/define the NEAR architecture to be finalized and approved by the SB.
Task 3. Deliveries: NEAR web platform for user browsing of metadata (data about data). Responsible: IT and database managers. Support from Maelstrom. Time: Jan-Dec 2019. The IT manager will further develop the NEAR webpage (xxx.xxxx-xxxxx.xx) to create a web platform that contains, in a homogeneous format, all the metadata that will be collected
in Module 3. The IT and database managers will update the NEAR website with information about the e-infrastructure, the organizational structure of NEAR, and a description of the single studies and develop an e-codebook that contains the information about all the variables in each study. The e-codebook will be interactive, sortable, and have expandable levels of information. NEAR’s users will thus be able to browse the material collected in the e- codebook; i.e., metadata and a list of variables in NEAR. This task is also fundamental to the smooth implementation of Module 4. During this task, the IT manager will evaluate the need for specific (e.g., Structured Query Language; SQL) software for database management.
Task 4. Deliveries: NEAR web platform for user data access. Responsible: NEAR coordinator. Support from Maelstrom. Time: Jan 2020- 2025.
The maintenance and upgrade of the NEAR web platform will continue after 2025. The OG will upgrade the NEAR web interface to allow data access and requests from external users. This task will follow the user procedures described in Module 5. Together with external supporters, the NEAR coordinator and the OG managers will propose procedures for creating the web-based user interface and propose the software needed to harmonize and distribute the data. Specifically, the OG will a) create a program that translates the e-codebook variables to study-specific codebook variables; b) develop the process for requesting, collecting, and providing data as depicted in Figure 2 (in particular, develop a query system for data retrieval from each center, leaving the local databases in full control of data access and request); c)
develop a software program that automatically renders the retrieved data uniform by creating a variable containing a predefined anonymous identification number for each participant, creating a variable with the identification code of each study, and merging the datasets; d) assure that the information about the user will be securely stored; and e) create a secure archive of the ongoing, closed, and rejected requests. Other requirements may be added after/during Module 5 completion. This task will require a secure server and new computers and software.
Module 3. Database documentation: four tasks
Module 3 is interconnected with Module 2 and provides the basis for Module 4.
Task 1. Deliveries: NEAR procedures for maintaining local databases. Responsible: NEAR coordinator. Support from SND. Time: Feb-Aug 2018.
The OG (IT and database managers) will interact with the local database managers to outline the procedures for maintaining the completed and ongoing databases. The NEAR managers will meet, personally or via tele-conference, with the local database and IT managers to evaluate differences in database management and compare the content of the databases (type of variables, collection procedure, and coding). During this period, the OG will meet regularly with external experts (Statistics Sweden [SCB] and the Swedish National Data Service [SND]) for consulting and suggestions.
Task 2. Deliveries: uniform local metadata and NEAR documentation. Responsible: NEAR coordinator. Support from SND. Time: May 2018-Feb 2019.
The main outcome of this task is to produce comparable and correctly classified metadata in the local databases and in NEAR. The local database managers will implement the procedures derived in Task 1, if not yet in place. The NEAR database manager will work closely with the local database managers to review the existing meta-database and ensure that the description is consistent across different databases. The NEAR manager, following the procedures developed in Task 1, will create metadata documentation for NEAR and ensure the databases’ documentation is produced in accordance with NEAR procedures. In particular, she/he will ensure that all documentation is in English; that there are codebooks for each data collection wave and records of any change across data collection waves (e.g., changes in lab references, measurement methods); and that there is a description of the reference population, a description of the sample, a baseline non-participation rate, and an attrition description. Note that, although uniform local metadata and NEAR documentation will be completed in February 2019, maintenance of documentation will be ongoing throughout the eight years.
Task 3. Deliveries: Documentation of existing linkage to registry. Responsible: NEAR and local database managers. Time: May 2018-Feb 2019.
The local database managers and NEAR manager will make an inventory of the registry linkage already available locally (type of registry, date of last request).
Task 4. Deliveries: NEAR-Register Utilizer Tool (RUT) interoperability. Responsible: IT and database managers. Support from RUT IT. Time: Oct 2018 onward.
The IT and database managers will evaluate solutions for rendering NEAR metadata documentation interoperable with RUT (xxx.xxxxxxxxxxxxxxxxx.xx) for register research. RUT is a new tool for searching and analyzing metadata and registers. RUT contains and links metadata about Swedish registers. NEAR will gain great advantage by making NEAR e- infrastructure interoperable with the RUT system, as this will expand the scientific potential of NEAR. This task might affect Module 2, Tasks 3 and 4.
Module 4. Harmonization of the NEAR databases: three tasks
The great potential of NEAR comes from the ability to harmonize the data already collected. Task 1. Deliveries: OG training. Responsible: coordinator and data use supervisor. Support from Maelstrom. Time: Jan-May 2018.
The coordinator and the supervisor will attend courses at Maelstrom in Canada to obtain additional experience in retrospective database harmonization.
Task 2. Deliveries: procedures for data harmonization (subject to review). Responsible: coordinator and data-use supervisor. Support from Maelstrom. Time: Jul 2018-Mar 2019. Harmonization of the NEAR databases is project-specific, and the harmonization process is driven by the research questions that the investigators/users are interested in studying. We will start by harmonizing the variables necessary to implement the projects described in the scientific plan. The OG will explore all possible methods of harmonizing data to establish simple and efficient harmonization procedures and necessary documentation for harmonization reproducibility. Although the harmonization is project-specific, the procedures are generalizable across the projects.
Task 3. Deliveries: harmonized data and documentation. Responsible: NEAR coordinator. Support from Maelstrom. Time: Apr 2019 onward.
Harmonization will be an ongoing activity that is performed on demand (when a research project is approved). To harmonize data, we will follow six steps:
1) Define research question, objectives, and protocol. To achieve clear and precise data harmonization, the request should include a research plan with clearly defined aims. The NEAR data-use supervisor will evaluate the scientific relevance of the proposed project and its harmonization potential. The coordinator will assist in this process and assure that harmonization follows the required procedures and that documentation is provided.
2) Assemble information as described in Module 3.
3) Define harmonization potential. The set of core variables targeted for harmonization is incorporated in DataSchemas and documented. The DataSchema defines common format measures to be derived with data from participating studies. Developing a DataSchema requires a balance between uniformity and acceptance of certain level of heterogeneity across studies. Some statistical methods (i.e., Item Response Theory methods, cross-walk methods) allow harmonization at a level above item-level raw data. This process often requires that DataSchema are finalized following an iterative process.
4) Assess the quality of variables included in the DataSchema and provide a common format for the data. Most of this step is accomplished by activities described in Modules 2 and 3.
5) Estimate the quality of the harmonized dataset: establish quality control procedures that include verification of the algorithms or statistical models applied and generation of basic quality checks and descriptive statistics.
6) Disseminate and preserve final harmonization products. Investigators/users not directly involved in the harmonization process must have access to comprehensive documentation on the harmonization procedures applied. The users will be able to fully understand and/or evaluate the steps and decisions made to produce the harmonized data.
Module 5. Data access procedures and user support: three tasks
Task 1. Deliveries: data access procedures. Responsible: SB. Time: Jul 2018-Mar 2019.
The data-use supervisor, with support from the SB, will develop the data access procedures in accordance with local database policies and NEAR policies. The procedures will determine the technical platform of the web interface (Module 2) and will include a detailed description of: a) how to submit a research proposal to NEAR; b) the NEAR internal approval process; c) the review process for ethical permits; d) how to track the approval process and how to provide a record of this process after its completion; e) the timeline for the data access process (project approval, data harmonization); f) the cost of data access (the fee will cover NEAR data processing and management); g) possible formats of the data to be provided to the users;
h) authorship, copyright, and intellectual property rights; i) NEAR acknowledgment; and j) user support.
Task 2. Deliveries: user support. Responsible: OG. Time: Apr 2019 onward.
With the NEAR structure almost complete, the OG will start to provide user support to explain data access, resolve technical issues, and help users perform meta-analyses or analyses of integrated data. User support service is often overlooked, especially in e- infrastructures where observational studies are included, although this is often the first factor that limits access or restrains users from requesting data.
Task 3. Deliveries: NEAR performance metrics. Responsible: data-use supervisor. Time: Apr 2019 onward.
The data-use supervisor and NEAR coordinator will outline measures to quantify NEAR’s scientific impact in Sweden and internationally and to track the use, impact, and results of the research projects that have used data from NEAR databases. Feedback from NEAR users will be encouraged.
Module 6. Maintenance, update, and enrichment of the databases: two tasks
Task 1. Deliveries: local database maintenance. Responsible: local database manager or/and NEAR database manager. Time: 2018 onward.
Six databases included in NEAR (the Betula Project, GENDER, KP, Octo-Twin, SATSA, and SALT) have already completed data collection. For these databases, the NEAR database manager or the local database manager, if present, will perform database maintenance and review/update the existing documentation.
Task 2. Deliveries: new data collection and updated documentation. Responsible: PIs. Time:
2018 onward.
Nine databases in NEAR are still ongoing. The local database manager and PIs will continue to ensure that the data collection satisfies the same high standards used in NEAR so far. The NEAR coordinator will guarantee that: a) original paper questionnaires and bio-samples (when available) are securely stored, and a storage management plan is in place; b) electronic data are stored in accordance with NEAR standards, or if needed, proper storage methods are provided by NEAR; c) main information about the databases is accessible through the Internet; and d) procedures for quality assurance, user accessibility, and database management are outlined to take the different needs of the local databases into consideration.
Module 7. Promoting and expanding NEAR: five tasks
Task 1. Deliveries: NEAR courses for users. Responsible: OG. Time: 2019 onward.
The OG will develop courses where potential and current NEAR users can learn about NEAR, the documentation provided, and the harmonization process. Other courses will be developed on demand. The OG will also prepare an educational plan in collaboration with the National Graduate School on Aging and Health (SWEAH).
Task 2. Deliveries: NEAR expansion. Responsible: NEAR coordinator. Time: 2019 onward. First, NEAR will expand via linkage to national registries. The database manager will update NEAR documentation with registry linkage when needed. Second, the NEAR coordinator, supported by the SB, will strive to expand the number of databases included in NEAR by integrating other population-based longitudinal studies of high quality, such as the GErontological Regional DAtabase and resource center (GERDA) in Umeå. Furthermore, other possible cohorts to include are those that originally were established to study health- related problems not linked to aging but whose study populations have now aged and become suitable for aging research (like the SMC and COSM longitudinal studies, which originally targeted cancer).
Task 3. Deliveries: communication with the public. Responsible: NEAR communicator.
Time: 2019 onward.
The communicator will update the webpage and write newsletters and scientific reports. Together with the data-use supervisor and NEAR coordinator, the communicator will list the
major reports derived from NEAR. The communicator will also write articles for the general public (nonscientific world).
Task 4. Deliveries: new collaborations. Responsible: SB. Time: 2020 onward.
On the basis of existing collaborations, the SB will plan future collaborations to establish a network with other similar database infrastructures inside and outside Sweden.
In Sweden
The Swedish National Graduate School for Competitive Science on Ageing and Health (SWEAH) to integrate the scientific activity of NEAR with a well-structured educational plan. SWEAH is supported by the VR, and several of the applicants in NEAR (XX Xxxxxxxx, I Xxxxx, X Xxxxxxxxx, L Fratiglioni) are involved in the school.
The European Social Survey – Sweden (ESS-S) in Umeå. ESS is a cross-national survey that has been conducted across Europe since 2001. ESS-S is one of the VR infrastructures of relevant national interest.
The Swedish Longitudinal Occupational Survey of Health (SLOSH) from Stockholm University. SLOSH is a prospective study on work environment and health and is a VR infrastructure of national interest.
The national SNAC Care System database infrastructure for medical and social care use from the Stockholm Gerontology Research Center, KI, Lund University, and the Blekinge Institute of Technology.
Clinical and quality registries such as SveDem for dementia cases, Senior-Alert for people at risk of falls, and registries from memory clinics could provide relevant information for NEAR.
In Europe
One co-founder of NEAR (X Xxxxxxxx) is PI of Social Inequalities in Ageing (SIA): Health, Care and Institutional Reforms in the Nordic Welfare Model, one of the five Nordic consortia funded by the NordForsk Programme on Health and Welfare (organized by the Nordic Council of Ministers). Exchange between the two infrastructures, NEAR and SIA, will benefit both.
Two co-founders (X Xxxxxxxxxxx and I Skoog) are already part of the EU-EPPiDem study, funded by the EU Joint Programme – Neurodegenerative Disease Research (JPND), and co-founder X Xxxxxxxx is part of the JPND co-funded project ADAGE: Alzheimer’s Disease pathology within the ageing physiology.
Possible future collaborations with clinical infrastructures might include consortia under development, such as Multimodal preventive trials for AD: towards multinational strategies (MIND-AD) and European Prevention of Alzheimer’s dementia (EPAD).
Outside Europe
Collaboration between ARC/KI and National University of Singapore is being discussed in the field of aging research and is supported by both universities. Future collaborations include sharing data from both sides (i.e., the Singapore Longitudinal Aging Study).
Extend the collaboration with the University of Sydney and Monash University in Australia to include the NEAR database and collaborate with the Australian National University’s Centre for Research on Ageing, Health and Wellbeing to validate the accuracy of risk scores for dementia and other disorders (Australian National University AD Risk Index [ANU-ADRI]).
A relevant potential collaboration is with the Canadian Longitudinal Study on Aging (CLSA), a large, national, long-term study that will follow 50,000 people between the ages of 45 and 85 for at least 20 years.
Task 5. Deliveries: kick-off & workshops. Responsible: NEAR-communicator. Time: yearly. The NEAR communicator will organize the kick-off meeting to celebrate the “start” of NEAR. The yearly workshops will be attended by all NEAR members and staff. NEAR users
will be invited to present preliminary results and discuss methods related to longitudinal population-based studies. The workshop will be the relevant forum for discussing new methods of data collection, how to increase the participation rate, and how to improve NEAR.
4 Time plan
We plan to build and implement NEAR during the first 4-year period as reported in the Gantt chart in Figure 3. During this initial period, NEAR will provide the first harmonized data for the five projects described in this application (see Scientific Plan). After this first harmonization, in the second 4-year period (Figure 4), NEAR will be completely open to external users. During this period, the major activity will be promoting and enlarging NEAR. We plan to include other datasets from longitudinal projects, increase collaboration with other databases/infrastructures, and increase the number of NEAR users. Update, maintenance, and enrichment of the local databases will cover both periods.
Figure 3. Gantt chart of the first four years: design, operationalization, and implementation of NEAR (2018-21).
Figure 4. Gantt chart of the second four-year period: finalization and running of NEAR (2022-25).
Abbreviations: SB= Steering Board, AB: Advisory Board, ScAB: Scientific AB, SoAB: Societal AB, EAB: Ethical AB, OG= Operational Group, Local db= local databases, RUT= Register Utiliser Tool.
5 SWOT and Risk analysis
NEAR is characterized by strengths and opportunities but also weaknesses and threats. A summary of the SWOT analysis is reported in Figure 5.
Strengths. The primary purpose of our initiative is to build a national e-infrastructure based on 15 databases that include high-quality data and have already generated relevant contributions to understanding the aging, health, and care of older adults. NEAR will bring together many of excellent research groups in the aging field in Sweden, all with a strong background and experience in setting up large observational, longitudinal studies.
Furthermore, NEAR benefits from the applicants’ varied expertise in geriatric medicine, neurology, genetics, psychiatry, psychology, epidemiology, public health, statistics, and IT. These factors provide a strong basis for the successful completion of NEAR.
Weaknesses. All the centers included in NEAR have extensive experience in managing large administrative, genetic, pharmaceutical, and disease-specific datasets and in building flexible and expandable databases. However, the harmonization of several databases is a new endeavor for the group. To help ensure success, the documentation and harmonization of NEAR data will be supported by the Maelstrom Research Group and SND.
Opportunities. Our initiative will promote and facilitate aging research in Sweden, increase international exchange and collaboration, enhance research quality and the generalizability of research findings, and help educate a new generation of researchers. The ultimate goal of our
unified efforts is to identify effective and sustainable intervention strategies for achieving better health and care for older people.
Threats. The great potential of NEAR is tightly linked to both the high quality of the data collected and their continuous maintenance. Quality and maintenance can only be achieved if the local databases have budgets sufficient to cover their needs. The lack of sufficient funds might jeopardize the entire NEAR infrastructure in the long run. Further, during NEAR implementation, the OG might encounter unexpected technological problems and security issues. Lastly, NEAR success will be undermined if the number of users is small.
Figure 5. SWOT analysis for NEAR.
Risk analysis
Event 1 - Turnover of NEAR leaders. Probability: high. Impact: medium. Strategy: some of the members of the SB will retire during the 8-year period. During the 8-year plan, the members will find the best candidates to replace retiring members of the SB. Some strong internal candidates have already been identified.
Event 2 - Recruiting. Probability: very low. Impact: medium. Strategy: at least three members of the OG must be recruited during the first year. Delay in their recruitment (beyond July 2018) would affect Modules 2 and 3. Module 2 would be postponed, but the other members of the OG have enough expertise in database management to perform the first-year tasks in Module 3.
Event 3 - Withdrawal of some cohorts. Probability: very low. Impact: medium. Strategy:
enlarge the infrastructure by including new cohort studies.
Event 4 - Long or difficult harmonization process. Probability: medium. Impact: high. Strategy: rely on the support of experienced external infrastructures, especially at the outset of the harmonization. Contact has been already established with Maelstrom Research. With their help, we can also find alternative strategies, such as metadata analyses.
Event 5 - Low number of users. Probability: very low. Impact: high. Strategy: the number of internal users (researchers in the studies included in NEAR) and their collaborators is large enough to provide a sufficient number of users for the 8-year time plan.
Event 6 - Not enough funding. Probability: low. Impact: high. Strategy: All PIs of the local databases have successful track records of research grants and financial support from co-
funders, as documented in the current budget. At the moment, there is no reason to expect different outcomes in the future. A key issue here is the VR support to this application.
Event 7 - No new databases or collaborations. Probability: very low. Impact: low. Strategy: NEAR already includes most of the longitudinal projects on aging in Sweden. This means that NEAR would not be highly affected if no new databases are included during the 8- year plan. We foresee it as quite unlikely that the well-known members of the SB, who have broad networks in the field of aging research, will not achieve new collaboration with the infrastructures mentioned in this application.
6 External Support for near - Interface with other infrastructures
The implementation of NEAR will be made possible, less expensive, quicker, and of higher quality by integrating the expertise of other national and international infrastructures in its development. In Tables E1 and E2 (see attachments), we summarize the external IT support needed to implement NEAR and its cost by year. Below, we enumerate the external infrastructures that NEAR has already contacted for support in creating the e-infrastructure.
The Swedish National Database Service (SND, xxx.xxx.xx.xx/xx).
SND supports databases to preserve, organize, maintain, and disseminate data for the purpose of research. SND will provide training to the members of NEAR’s OG on the correct and best way to classify metadata (Module 2, Task 1). Moreover, SND will help the OG develop NEAR procedures for maintaining local databases (Module 3, Task 1). Finally, eleven of the databases included in NEAR, and NEAR itself, are already registered in the SND catalogue. This is crucial to the reliable and fast implementation of Module 3, Task 2 (creating uniform local metadata and NEAR documentation).
Maelstrom Research (xxx.xxxxxxxxx-xxxxxxxx.xxx).
Maelstrom Research is a non-profit Canadian group that aims to develop tools and resources that facilitate data harmonization and co-analysis across studies. Four of the 15 datasets in NEAR (GENDER, H70, KP, and SHARE-S) are already described in the Maelstrom repository, and five (COSM, OCTO-Twin, SATSA, SMC, SNAC-K) are both described in and have their variables classified in Maelstrom. This last step in particular makes it already possible for users to browse variables included in different databases and compare the availability, wording, and labeling across studies. Maelstrom will help the OG derive an online classification of all databases’ variables and support the creation of the user web- interface (Module 2, Tasks 2-4) through the use of Maelstrom open source software Opal and Mica. Because Xxxxxxxxx has great experience harmonizing data and has accomplished data harmonization of great quality, Xxxxxxxxx’x support will be fundamental in Module 4. Their support will be large at the beginning (2018-21) but will decrease as the OG accumulates experience and the infrastructure is consolidated (2022-25).
Swedish National Infrastructure for Computing (SNIC, xxx.xxxx.xx.xx)
SNIC provides a set of resources and user support for large-scale computation and data storage. Most importantly for NEAR, SNIC provides support for IT issues faced by e- infrastructures. The NEAR IT manager will develop a secure server for handling data at ARC (Module 2, Task 4) that will comply with NEAR security policies (outlined by the SB). If unexpected technical problems should arise, the IT manager will consult with SNIC technical coordinators. Moreover, from year 5, we will need to rent space at SNIC for high performance computing to analyze GWAS and MRI data (see “Computation” and “Storage,” Table E1).
The Swedish University Computer Network (SUNET, xxx.xxxxx.xx)
SUNET provides high-speed Internet access to academic institutions in Sweden. All universities involved in NEAR are already connected through SUNET. NEAR will take
advantage of this stable and secure connection to obtain encrypted data transfer and secure connections between the central and local databases. Moreover, through KI, we will provide a 2-factor authentication method for user data access. SUNET will support NEAR during the development phase in Module 2.
The Register Utiliser Tool (RUT, xxx.xxxxxxxxxxxxxxxxx.xx).
We plan to establish collaboration with RUT, a new tool for searching and analyzing metadata and national registers. The tool facilitates the identification and exploration of registers and register variables. It will provide access to structured information on variables that have associated metadata in the registers connected to the tool. NEAR will gain great advantage by making its e-infrastructure interoperable with RUT.
7 Current status of NEAR after 1.3 years of coordination
A VR grant for infrastructure coordination enabled us to begin planning NEAR in 2016 (Figure 6).
The co-founders kicked off the project in February 2016. At that meeting, the PIs discussed the future action plan and strategy for NEAR. The PI’s and the database managers of the local databases met again in May 2016 and via tele-conferences several other times (Nov 2016, Jan and Feb 2017).
In the meantime, to make NEAR visible to the public, the coordinator has developed a webpage (www.near- xxxxx.xx) where information about the infrastructure, its databases, and upcoming events is always updated.
All the PIs have been actively engaged in outlining and finalizing the present grant application for the 2017 VR call for infrastructures.
Figure 6. Location of the cohorts of older adults included in the
The OG has also contacted national and international infrastructures that could provide technical and operational support during the implementation phase. The group has met in person with the representatives of the SND, SNIC, and SUNET and via tele-conference with Maelstrom Research. During the meetings, the group presented the NEAR infrastructure and discussed possible architectural solutions with the operational support groups.
The four SNAC centers have already begun harmonizing their databases and creating a prototype of NEAR e-infrastructure. In particular, the NEAR coordinator and the database managers of the four centers have met monthly to tabulate, compare, and create a harmonized common database of locally stored data. Moreover, they have developed prototype software for data harmonization and user access.
Finally, several PIs of the local databases have already collaborated by analyzing pooled data from some of the databases. One of these research projects involved data from the Gothenburg Birth Cohort studies, Kungsholmen project, and Finnish CAIDE to explore the relationship between apolipoprotein E (APOE) genotype, education, and dementia over a decade. Finally, the four SNAC centers have already completed studies using pooled data on formal and informal care, dementia occurrence, and social service use.
Table E1. NEAR´s need of external support from e-infrastructures
Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
Computation | None | None | None | None | “Big data” analysis | Same as Year 5 | Same as Year 5 | Same as Year 5 |
Storage | One server with: 2 CPUs Disk space 1 Tb 8 Gb RAM | One server with similar characteristics as Year 1 | One server with similar characteristics as Year 1 | 10 Tb for HPC | Same | Same | Same | |
Advanced user | ||||||||
Network | 2-factor authentication All communication encrypted Location Sweden OptoSunet | Same | Same | Same | Same | Same | Same |
Table E2. Cost estimation for NEAR´s need as listed in Table E1 (SEK)
Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
Computation | 100000 | 100000 | 100000 | 100000 | ||||
Storage | 200000 | 200000 | 200000 | 5000000 | 5000000 | 5000000 | 5000000 | |
Advanced user | ||||||||
Network | 100000 | 100000 | 100000 | 200000 | 200000 | 200000 | 200000 | |
NEAR equipment (depreciation not included) | 200000 | 500000 | 500000 | 500000 | 200000 | 200000 | 200000 | 200000 |
Total | 200000 | 800000 | 800000 | 800000 | 1000000 | 1000000 | 1000000 | 1000000 |
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Driftskostnader
Driftskostnader Beskrivning | 2018 | 2019 2020 | 2021 | ||
1 | Module 1 | Organization, management and policy in NEAR | 1 165 800 | 1 170 800 1 178 100 | 1 185 500 |
2 | Module 2 | Building the architecture and the technical platform of NEAR | 830 300 | 1 211 600 1 233 700 | 1 254 600 |
3 | Module 3 | Database documentation | 3 585 400 | 3 611 300 3 233 500 | 3 428 700 |
4 | Module 4 | Harmonization of NEAR databases | 2 743 100 | 3 666 500 3 488 800 | 3 441 200 |
5 | Module 5 | Data access procedures, use, and user support | 371 400 | 457 600 468 600 | 479 700 |
6 | Module 6 | Maintenance, update and enrichment of the databases | 8 162 300 | 8 171 600 12 033 000 | 8 512 400 |
7 | Module 7 | Promoting/expanding | 1 451 400 | 1 708 500 1 679 000 | 1 697 400 |
Totalt | 18 309 700 19 997 900 23 314 700 19 999 500 | ||||
2022 2023 | 2024 | 2025 | Totalt | ||
1 | 1 192 900 1 199 000 1 206 500 1 215 000 9 513 600 | ||||
2 | 1 891 800 1 913 900 1 937 300 1 960 600 12 233 800 | ||||
3 | 2 798 800 2 734 700 2 792 500 2 992 900 25 177 800 | ||||
4 | 2 619 900 2 679 100 2 738 000 2 797 700 24 174 300 | ||||
5 | 239 900 246 100 | 252 100 | 257 100 | 2 772 500 | |
6 | 8 413 100 8 301 100 10 207 900 8 584 200 72 385 600 | ||||
7 | 1 840 100 1 859 800 1 880 700 1 901 600 14 018 500 | ||||
Totalt | 18 996 500 18 933 700 21 015 000 19 709 100 160 276 100 | ||||
Avskrivning | Beskrivning | 2018 | 2019 | 2020 | 2021 |
1 Module 2 | IT platform+ software | 20 000 | 120 000 | 220 000 | 320 000 |
2 Module 2 | Personal Computers | 25 000 | 25 000 | 25 000 | 25 000 |
Totalt | 45 000 | 145 000 | 245 000 | 345 000 | |
2022 2023 | 2024 | 2025 | Totalt | ||
1 | 000 000 000 000 | 330 000 | 240 000 | 2 050 000 | |
2 | 25 000 25 000 | 25 000 | 25 000 | 200 000 | |
Totalt | 405 000 445 000 | 355 000 | 265 000 | 2 250 000 |
Total budget*
Specificerade kostnader | 2018 | 2019 | 2020 2021 2022 | ||
1 | Driftskostnader | 18 309 700 | 19 997 900 | 23 314 700 19 999 500 18 996 500 | |
2 | Avskrivningar utrustning | 45 000 | 145 000 | 245 000 345 000 405 000 | |
3 | Total projektkostnad | 18 354 700 | 20 142 900 | 23 559 700 20 344 500 19 401 500 | |
0000 0000 | 0000 | Totalt, sökt | Annan kostnad Total kostnad | ||
1 | 18 933 700 21 015 000 | 19 709 100 | 160 276 100 | 200 075 000 | 360 351 100 |
2 | 445 000 355 000 | 265 000 | 2 250 000 | 0 | 2 250 000 |
3 | 19 378 700 21 370 000 | 19 974 100 | 162 526 100 | 200 075 000 | 362 601 100 |
Budget*
Se nästa sida för bilaga.
1 Compilation Costs | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
1.1 Module 1 - Organization, management and policy in NEAR | 22 719 | 3 621 | 3 668 | 3 741 | 2 268 | 2 303 | 2 337 | 2 374 | 2 408 | |
1.2 Module 2 - Building the architecture and the technical platform of NEAR | 14 804 | 915 | 1 397 | 1 519 | 1 640 | 2 337 | 2 399 | 2 332 | 2 266 | |
1.3 Module 3 - Database documentation | 34 452 | 4 712 | 4 724 | 4 311 | 4 613 | 4 000 | 3 945 | 3 913 | 4 235 | |
1.4 Module 4 - Harmonization of the NEAR databases | 26 681 | 3 053 | 3 967 | 3 796 | 3 757 | 2 943 | 3 010 | 3 044 | 3 112 | |
1.5 Module 5 - Data access procedures, use, and user support | 23 873 | 421 | 508 | 1 969 | 3 480 | 3 240 | 4 746 | 4 752 | 4 757 | |
1.6 Module 6 - Maintenance, update and enrichment of the databases | 226 055 | 29 884 | 29 932 | 30 688 | 26 626 | 26 550 | 26 544 | 29 010 | 26 820 | |
1.7 Module 7 - Promoting/expanding | 14 019 | 1 451 | 1 709 | 1 679 | 1 697 | 1 840 | 1 860 | 1 881 | 1 902 | |
1 | Sum total costs: | 362 601 | 44 058 | 45 904 | 47 702 | 44 081 | 43 213 | 44 841 | 47 305 | 45 499 |
2 Compilation | Revenues - Contributions | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
2.1 Vetenskapsrådet (This proposal, to Prisma) | 162 526 | 18 355 | 20 143 | 23 560 | 20 345 | 19 402 | 19 379 | 21 370 | 19 974 | ||
2.2 Consortium member - Karolinska Institutet (KI) | 18 408 | 2 515 | 2 552 | 3 045 | 1 852 | 1 901 | 2 029 | 2 477 | 2 037 | ||
2.3 Consortium member - Lund University (LU) | 19 679 | 2 487 | 2 521 | 2 553 | 2 407 | 2 416 | 2 422 | 2 431 | 2 442 | ||
2.4 Consortium member - Blekinge Tekniska Högskola (BTH) | 916 | 230 | 195 | 176 | 60 | 62 | 63 | 65 | 66 | ||
2.5 Consortium member - Gothenburg University (GU) | 5 297 | 831 | 839 | 839 | 550 | 554 | 558 | 562 | 565 | ||
2.6 Consortium member - Umeå University (UmU) | 13 | 7 | 7 | 0 | 0 | 0 | 0 | 0 | 0 | ||
2.7 Consortium member - Jönköping University (JU) | 662 | 135 | 138 | 139 | 47 | 49 | 50 | 51 | 52 | ||
2.8 KI-other funders: Stiftelsen Äldrecentrum; Region Gävleborg & Municipality of Nordanstig | 46 080 | 5 760 | 5 760 | 5 760 | 5 760 | 5 760 | 5 760 | 5 760 | 5 760 | ||
2.9 LU-other funders: Ministry of Social Affairs & Region Skåne | 7 262 | 3 631 | 3 631 | 0 | 0 | 0 | 0 | 0 | 0 | ||
2.10 BTH-other funders: Ministry of Social Affairs | 21 600 | 2 700 | 2 700 | 2 700 | 2 700 | 2 700 | 2 700 | 2 700 | 2 700 | ||
2.11 GU-other funders: EU, Forte; Alzhiemrfonden & Hjärnfonden | 56 000 | 7 000 | 7 000 | 7 000 | 7 000 | 7 000 | 7 000 | 7 000 | 7 000 | ||
2.12 UmU-other funders: EU (Lifebrain) & KAW (Wallenberg scholar) | 3 158 | 409 | 418 | 430 | 360 | 369 | 380 | 389 | 403 | ||
2.13 JU-other funders | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | ||
2 | Sum Contributions (VR, consortium and other funders): | 341 601 | 44 058 | 45 904 | 46 202 | 41 081 | 40 213 | 40 341 | 42 805 | 40 999 | |
3 Compilation | Revenues - User fees | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | ||
3.1 | User fees Module 5 | 21 000 | 0 | 0 | 1 500 | 3 000 | 3 000 | 4 500 | 4 500 | 4 500 | ||
3 | Sum estimated revenues from user fees: | 21 000 | 0 | 0 | 1 500 | 3 000 | 3 000 | 4 500 | 4 500 | 4 500 | ||
2+3 | Sum estimated total revenues : | 362 601 | 44 058 | 45 904 | 47 702 | 44 081 | 43 213 | 44 841 | 47 305 | 45 499 |
Module 1 | Organization, management and policy in NEAR | Cost item | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 |
M 1.1 | 5 Steering Board Members - KI (Chair: 30% per 3y + 20% per 5y; Other: 15% per 3y + 5% per5y) | Salary+'LKP' | 7 512 | 1 332 | 1 353 | 1 389 | 654 | 670 | 688 | 705 | 721 |
M 1.2 | 1 Steering Board Member - LU (15% per 3y + 5% per 5y) | Salary+'LKP' | 1 000 | 000 | 000 | 258 | 88 | 90 | 92 | 95 | 97 |
M 1.3 | 2 Steering Board Members - GU (15% per 3y + 5% per 5y) | Salary+'LKP' | 2 076 | 420 | 428 | 439 | 150 | 154 | 158 | 162 | 165 |
M 1.4 | 2 Steering Board Members - UmU (15% per 3y + 5% per 5y) | Salary+'LKP' | 912 | 156 | 158 | 162 | 83 | 85 | 87 | 89 | 92 |
M 1.5 | 1 Steering Board Member - BTH (15% per 3y + 5% per 5y) | Salary+'LKP' | 830 | 167 | 171 | 176 | 60 | 62 | 63 | 65 | 66 |
M 1.6 | 1 Steering Board Member -JU (15% per 3y + 5% per 5y) | Salary+'LKP' | 657 | 133 | 136 | 139 | 47 | 49 | 50 | 51 | 52 |
M 1.7 | Steering Board meetings (Travel and accommodation - 2/3 per year) | Other | 2 400 | 300 | 300 | 300 | 300 | 300 | 300 | 300 | 300 |
M 1.8 | Advisory Boards meetings (Including international guests - 1 per year) | Other | 1 200 | 150 | 150 | 150 | 150 | 150 | 150 | 150 | 150 |
M 1.9 | NEAR communicator 20% | Salary+'LKP' | 1 299 | 150 | 152 | 156 | 160 | 164 | 168 | 172 | 177 |
M 1.10 | NEAR coordinator 10% | Salary+'LKP' | 725 | 84 | 86 | 88 | 90 | 92 | 93 | 95 | 97 |
M 1.11 | Rent of premises / NEAR staff | Premises | 2 520 | 315 | 315 | 315 | 315 | 315 | 315 | 315 | 315 |
M 1.12 | Indirect costs | Indirect costs | 1 000 | 000 | 000 | 169 | 171 | 172 | 173 | 175 | 176 |
Compilation 1.1 | Sum estimated costs, this Module: | 22 719 | 3 621 | 3 668 | 3 741 | 2 268 | 2 303 | 2 337 | 2 374 | 2 408 |
y=years
Module 2 | Building the architecture and the technical platform of NEAR | Cost item | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | ||
M 2.1 | IT support - KI | Salary+'LKP' | 320 | 40 | 40 | 40 | 40 | 40 | 40 | 40 | 40 | ||
M 2.2 | NEAR IT manager 80% | Salary+'LKP' | 5 197 | 600 | 609 | 625 | 640 | 656 | 672 | 689 | 706 | ||
M 2.3 | NEAR database manager 10% | Salary+'LKP' | 649 | 75 | 76 | 78 | 80 | 82 | 84 | 86 | 88 | ||
M 2.4 | External support - SUNET | Other | 2 100 | 0 | 300 | 300 | 300 | 300 | 300 | 300 | 300 | ||
M 2.5 | External support - SNIC | Other | 2 000 | 0 | 0 | 0 | 0 | 500 | 500 | 500 | 500 | ||
M 2.6 | Equipment: IT platform & software - NEAR and local databases | Depreciation | 2 050 | 20 | 120 | 220 | 320 | 380 | 420 | 330 | 240 | ||
M 2.7 | Equipment: PC - NEAR and local databases | Depreciation | 200 | 25 | 25 | 25 | 25 | 25 | 25 | 25 | 25 | ||
M 2.8 | Indirect costs | Indirect | 2 288 | 155 | 227 | 231 | 235 | 354 | 358 | 362 | 367 | ||
Compilation 1.2 | Sum estimated costs, this Module: | 14 804 | 915 | 1 397 | 1 519 | 1 640 | 2 337 | 2 399 | 2 332 | 2 266 | |||
of which are depriciable costs: | 2 250 | 45 | 145 | 245 | 345 | 405 | 445 | 355 | 265 | ||||
Module 3 | Databases documentation | Cost item | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
M 3.1 | 4 Database managers -KI - (Average 36% per person/ yearly) | Salary+'LKP' | 8 270 | 1 204 | 1 217 | 876 | 988 | 1 022 | 934 | 947 | 1 082 | |
M 3.3 | 1 Study manager - KI - 20% | Salary+'LKP' | 1 205 | 90 | 92 | 94 | 196 | 200 | 205 | 110 | 218 | |
M 3.4 | 1 Database manager - LU - 40% | Salary+'LKP' | 3 204 | 372 | 381 | 387 | 396 | 404 | 412 | 421 | 431 | |
M 3.5 | 1 Database manager - BTH - 5% | Salary+'LKP' | 130 | 86 | 44 | 0 | 0 | 0 | 0 | 0 | 0 | |
M 3.6 | 2 Database managers - GU - (Avarage 28% per person/ yearly) | Salary+'LKP' | 8 588 | 1 041 | 1 047 | 1 057 | 1 067 | 1 078 | 1 089 | 1 099 | 1 110 | |
M 3.7 | 1 Project manager - UmU - 10% | Salary+'LKP' | 496 | 56 | 58 | 60 | 62 | 62 | 64 | 66 | 68 | |
M 3.8 | 1 Research nurse - UmU - 10% | Salary+'LKP' | 504 | 56 | 58 | 60 | 62 | 64 | 66 | 68 | 70 | |
M 3.9 | 1 Database manager - JU - 25% | Salary+'LKP' | 1 502 | 173 | 176 | 181 | 185 | 190 | 194 | 199 | 204 | |
M 3.10 | NEAR coordinator (20% yearly/ year 1-4 + 10% yearly/year 5-8) | Salary+'LKP' | 1 079 | 169 | 171 | 176 | 180 | 92 | 95 | 97 | 99 | |
M 3.11 | NEAR database manager (80% yearly/year 1-4 + 20% yearly/year 5-8) | Salary+'LKP' | 3 156 | 600 | 609 | 624 | 640 | 164 | 169 | 173 | 177 | |
M 3.12 | NEAR IT manager 20% | Salary+'LKP' | 1 299 | 150 | 152 | 156 | 160 | 164 | 168 | 172 | 177 | |
M 3.13 | Indirect costs | Indirect | 5 019 | 716 | 719 | 639 | 677 | 560 | 549 | 561 | 599 | |
Compilations 1.3 | Sum estimated costs, this Module: of which are depriciable costs: | 34 452 | 4 712 | 4 724 | 4 311 | 4 613 | 4 000 | 3 945 | 3 913 | 4 235 |
Module 4 | Harmonization of NEAR-databases | Cost item | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
M 4.1 | 5 Database managers -KI - (Average 15% per person/year) | Salary+'LKP' | 4 521 | 392 | 762 | 779 | 799 | 431 | 442 | 453 | 464 | |
M 4.2 | 1 Database manager - LU - (Average 20% per year) | Salary+'LKP' | 1 928 | 175 | 314 | 321 | 329 | 191 | 195 | 200 | 203 | |
M 4.3 | 1 Database manager - BTH - (Average 15% per year) | Salary+'LKP' | 836 | 87 | 141 | 144 | 148 | 76 | 78 | 80 | 82 | |
M 4.4 | 2 Database managers - GU - (Average 38% per person/ yearly) | Salary+'LKP' | 2 919 | 247 | 503 | 515 | 528 | 271 | 278 | 285 | 292 | |
M 4.5 | 1 Database manager - UmU- (Average 15% per year) | Salary+'LKP' | 2 145 | 236 | 287 | 294 | 303 | 262 | 269 | 243 | 251 | |
M 4.6 | 1 Database manager - JU - (Average 15% per year) | Salary+'LKP' | 818 | 69 | 141 | 144 | 148 | 76 | 78 | 80 | 82 | |
M 4.7 | NEAR coordinator - (20% yearly/years 1-4 + 10% yearly/years 5-8) | Salary+'LKP' | 1 079 | 169 | 171 | 176 | 180 | 92 | 95 | 97 | 99 | |
M 4.8 | NEAR database manager - (10% yearly/years 1-4 + 70% yearly/years 5-8) | Salary+'LKP' | 2 691 | 75 | 76 | 78 | 80 | 574 | 588 | 602 | 618 | |
M 4.9 | NEAR data use supervisor - (20% yearly) | Salary+'LKP' | 1 622 | 187 | 190 | 195 | 200 | 205 | 210 | 215 | 220 | |
M 4.10 | External support- MAELSTROM Research | Other | 1 600 | 400 | 400 | 200 | 200 | 100 | 100 | 100 | 100 | |
M 4.11 | External support- SND | Other | 1 200 | 300 | 200 | 200 | 100 | 100 | 100 | 100 | 100 | |
M 4.12 | Training - NEAR coordinator & Data use supervisor | Other | 530 | 180 | 50 | 50 | 50 | 50 | 50 | 50 | 50 | |
M 4.13 | Indirect costs | Indirect | 4 792 | 536 | 732 | 700 | 692 | 515 | 527 | 539 | 551 | |
Compilations 1.4 | Sum estimated costs, this Module: of which are depriciable costs: | 26 681 | 3 053 | 3 967 | 3 796 | 3 757 | 2 943 | 3 010 | 3 044 | 3 112 |
Module 5 | Data access procedures, use, and user support | Cost item | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
M 5.1 | 5 Steering Board Members - KI (3 days per year per person) | Salary+'LKP' | 52 | 26 | 26 | |||||||
M 5.2 | 1 Steering Board Member - LU (3 days per year) | Salary+'LKP' | 6 | 3 | 3 | |||||||
M 5.3 | 1 Steering Board Member - BTH (3 days per year) | Salary+'LKP' | 3 | 2 | 2 | |||||||
M 5.4 | 2 Steering Board Members - GU (3 days per year per person) | Salary+'LKP' | 21 | 11 | 11 | |||||||
M 5.5 | 2 Steering Board Members - UmU (3 days per year per person) | Salary+'LKP' | 13 | 7 | 7 | |||||||
M 5.6 | 1 Steering Board Member - JU (3 days per year) | Salary+'LKP' | 5 | 2 | 2 | |||||||
M 5.7 | NEAR coordinator 10% | Salary+'LKP' | 731 | 84 | 86 | 88 | 90 | 92 | 95 | 97 | 99 | |
M 5.8 | NEAR data-use supervisor (30% per 4 years + 10% per 4 years) | Salary+'LKP' | 1 523 | 218 | 286 | 293 | 300 | 103 | 105 | 108 | 110 | |
M 5.9 | Cost for data delivery to the users - estimation | Other | 21 000 | 0 | 0 | 1 500 | 3 000 | 3 000 | 4 500 | 4 500 | 4 500 | |
M 5.10 | Indirect costs | Indirect costs | 519 | 69 | 86 | 88 | 90 | 45 | 46 | 47 | 48 | |
Compilation 1.5 | Sum estimated costs, this Module: of which are depriciable costs: | 23 873 | 421 | 508 | 1 969 | 3 480 | 3 240 | 4 746 | 4 752 | 4 757 |
Module 6 | Maintenance, update and enrichment of the databases | Cost item | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
M 6.1 | 4 Database managers -KI (Avarage 38% per y per person) | Salary+'LKP' | 23 737 | 2 992 | 2 880 | 2 996 | 3 089 | 2 826 | 2 858 | 3 176 | 2 920 | |
M 6.2 | 1 Database assistant -KI - 100% | Salary+'LKP' | 5 000 | 000 | 000 | 664 | 680 | 697 | 714 | 732 | 750 | |
M 6.3 | 1 Lab technician - KI - 50% | Salary+'LKP' | 2 639 | 305 | 309 | 317 | 325 | 333 | 341 | 350 | 359 | |
M 6.4 | Data collection (MD, nurses, psycologists) - KI | Salary+'LKP' | 40 048 | 4 528 | 4 456 | 7 462 | 4 468 | 4 474 | 4 480 | 5 686 | 4 494 | |
M 6.5 | 1 Study manager - KI - 50% | Salary+'LKP' | 3 283 | 303 | 311 | 799 | 227 | 233 | 325 | 836 | 249 | |
M 6.6 | Lab test -KI | Other | 1 938 | 120 | 250 | 254 | 256 | 260 | 262 | 266 | 270 | |
M 6.7 | Biobank -KI | Other | 1 600 | 200 | 200 | 200 | 200 | 200 | 200 | 200 | 200 | |
M 6.8 | Update National Register - KI | Other | 250 | 0 | 0 | 0 | 0 | 150 | 0 | 0 | 100 | |
M 6.9 | Premises - KI | Premises | 256 | 32 | 32 | 32 | 32 | 32 | 32 | 32 | 32 | |
M 6.10 | 1 Database manager -LU - 40% | Salary+'LKP' | 2 362 | 275 | 281 | 285 | 292 | 298 | 304 | 310 | 317 | |
M 6.11 | 1 Database assistant -LU - 80% | Salary+'LKP' | 4 284 | 499 | 509 | 519 | 530 | 541 | 551 | 562 | 573 | |
M 6.12 | 1 Lab technician - LU - 40% | Salary+'LKP' | 8 687 | 1 010 | 1 029 | 1 051 | 1 072 | 1 096 | 1 119 | 1 143 | 1 167 | |
M 6.13 | Data collection (MD, nurses, psycologists) -LU | Salary+'LKP' | 19 735 | 5 229 | 5 238 | 1 615 | 1 610 | 1 572 | 1 530 | 1 489 | 1 452 | |
M 6.14 | Lab test -LU | Other | 664 | 83 | 83 | 83 | 83 | 83 | 83 | 83 | 83 | |
M 6.15 | Biobank -LU | Other | 1 336 | 167 | 167 | 167 | 167 | 167 | 167 | 167 | 167 | |
M 6.16 | 1 Database manager - BTH - 50% | Salary+'LKP' | 2 800 | 350 | 350 | 350 | 350 | 350 | 350 | 350 | 350 | |
M 6.17 | 1 Lab technician - BTH - 20% | Salary+'LKP' | 960 | 120 | 120 | 120 | 120 | 120 | 120 | 120 | 120 | |
M 6.18 | Data collection - BTH | Salary+'LKP' | 21 600 | 2 700 | 2 700 | 2 700 | 2 700 | 2 700 | 2 700 | 2 700 | 2 700 | |
M 6.19 | Lab test -BTH | Other | 240 | 30 | 30 | 30 | 30 | 30 | 30 | 30 | 30 | |
M 6.20 | 2 research nurses - GU - 100% | Salary+'LKP' | 10 000 | 1 250 | 1 250 | 1 250 | 1 250 | 1 250 | 1 250 | 1 250 | 1 250 | |
M 6.21 | Data collection - GU | Other | 56 000 | 7 000 | 7 000 | 7 000 | 7 000 | 7 000 | 7 000 | 7 000 | 7 000 | |
M 6.22 | 1 Database manager - GU - 20% | Salary+'LKP' | 911 | 105 | 107 | 109 | 112 | 115 | 118 | 121 | 124 | |
M 6.23 | 1 Project manager - UmU - 10% | Salary+'LKP' | 572 | 58 | 59 | 61 | 62 | 64 | 65 | 100 | 103 | |
M 6.24 | 1 Research nurse - UmU - 20% | Salary+'LKP' | 1 113 | 127 | 129 | 133 | 137 | 141 | 145 | 148 | 153 | |
M 6.25 | Data collection - JU | Salary+'LKP' | 800 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | |
M 6.26 | NEAR coordinator - 10% | Salary+'LKP' | 731 | 84 | 86 | 88 | 90 | 92 | 95 | 97 | 99 | |
M 6.27 | Indirect costs | Indirect | 13 961 | 1 580 | 1 582 | 2 303 | 1 644 | 1 626 | 1 605 | 1 962 | 1 658 | |
Compilations 1.6 | Sum estimated costs, this Module: of which are depriciable costs: | 226 055 | 29 884 | 29 932 | 30 688 | 26 626 | 26 550 | 26 544 | 29 010 | 26 820 |
Module 7 | Promoting/ expanding | Cost item | Total | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
M 7.1 | NEAR communicator - 80% | Salary+'LKP' | 5 197 | 600 | 609 | 625 | 640 | 656 | 672 | 689 | 706 | |
M 7.2 | Kick-off and annual workshop (1 per year) | Other | 2 000 | 250 | 250 | 250 | 250 | 250 | 250 | 250 | 250 | |
M 7.3 | Courses and conferences | Other | 1 200 | 100 | 100 | 100 | 100 | 200 | 200 | 200 | 200 | |
M 7.4 | Webpage, newsletters, and reports | Other | 400 | 80 | 80 | 40 | 40 | 40 | 40 | 40 | 40 | |
M 7.5 | Operational meetings | Other | 1 200 | 150 | 150 | 150 | 150 | 150 | 150 | 150 | 150 | |
M 7.6 | National Registers costs | Other | 1 400 | 0 | 200 | 200 | 200 | 200 | 200 | 200 | 200 | |
M 7.6 | Indirect costs | Indirect | 2 622 | 271 | 320 | 314 | 317 | 344 | 348 | 352 | 356 | |
Compilations 1.7 | Sum estimated costs, this Module: of which are depriciable costs: | 14 019 | 1 451 | 1 709 | 1 679 | 1 697 | 1 840 | 1 860 | 1 881 | 1 902 |
Compilation 4 | Existing resources which the consortium makes available to the infrastructure | Total Value | Year 1 | Year 2 | Year 3 | Year 4 | Year 5 | Year 6 | Year 7 | Year 8 | |
4.1 SNAC-K database with 16-year follow-up | 112 000 | ||||||||||
4.2 KP database with 13-year follow-up | 52 000 | ||||||||||
4.3 SALT database with 10-year follow-up | 8 000 | ||||||||||
4.4 SATSA database with 32-year follow-up | 60 000 | ||||||||||
4.5 SMC database with 20-year follow-up | 182 000 | ||||||||||
4.6 COSM database with 11-year follow-up | 133 000 | ||||||||||
4.7 SWEOLD database - over 40-year follow-up | 20 000 | ||||||||||
4.8 SNAC-N database with 16-year follow-up | 20 000 | ||||||||||
4.9 SNAC database with 16-year follow-up | 144 668 | ||||||||||
4.10 SNAC-B database with 16-year follow-up | 37 000 | ||||||||||
4.11 H70/KVUS/H85/H95+ database - over 40-year follow-up | 170 000 | ||||||||||
4.12 Octo-Twin database with 10-year follow-up | 7 000 | ||||||||||
4.13 Betula database database with 30-year follow-up | 120 150 | ||||||||||
4.14 SHARE -database with 12-year follow-up | na | ||||||||||
4.15 Gender database with 8-year follow-up | 7 000 | ||||||||||
4 | Total value of existing resources (is only shown here and is not part of contributions, revenues or costs): | 1 072 818 | |||||||||
NEAR: The National E-infrastructure for Aging Research in Sweden
Budget specification
As shown in the four tables of the budget (so-called compilations), most of the cost of NEAR derives from the maintenance, update, follow-up, and enrichment of the local databases. Without this opportunity, NEAR will be an “infrastructure of the past,” as it will only include data collected in past decades in Sweden. Although these resources are highly valuable, both from a scientific (see key references) and economic (see table-compilation 4) perspective, the lack of future data collection will hamper any further development of NEAR.
The total cost of NEAR is more than double the sum we seek from VR. Without matching funds from the universities and other co-funders, it will be impossible to collect and use such a large amount of clinical, biological, and social data. The full implementation of NEAR is based on seven modules. Each module includes several tasks that require staff, equipment, consultancy, and running expenses.
Module 1 - Organization and management
The organization, expansion, and correct functioning of NEAR and the development of policies and procedures for the e-infrastructure are guaranteed by the Steering Board (SB), which consists of the 12 PIs of the 15 datasets participating in NEAR. The cost of their salaries is covered by the six universities, members of the consortium.
The requested budget to VR includes: 1) expenses for the SB’s meetings (2 to 3 per year) and the Advisory Board’s meetings (1 per year), including economy travel tickets and a one- or two-night stay; 2) 20% of the salary for the NEAR communicator; 3) 10% of the salary for the NEAR coordinator; and 4) premises for NEAR staff, including the five members of the Operational Group (OG).
Module 2 - Building the technical platform
The requested budget covers the salary of the IT manager (80%), the database (DB) manager (10%), and the cost of IT support from SUNET and SNIC. SNIC’s role will start after 2021, when the platform will be ready to use big data (MRI and genetic data). The budget includes the purchase of one personal computer for each database included in NEAR, software to homogenize the databases (i.e., Oracle), and the required licenses.
Module 3 - Database documentation
In Module 3, the NEAR and local DB managers will determine shared procedures for maintaining the databases and will render their local metadata uniform. This module will be the foundation for harmonizing the data (Module 4). The costs in Module 3 will primarily include the salaries of the local DB or study managers. The remaining budget concerns the NEAR coordinator who facilitates local-level work, and the IT manager who supports both local DB and NEAR coordinators. The varying percentages of staff cost depend on the amount and type of data collected in the respective datasets. Local databases with ongoing large data collection will require a higher percentage of work than smaller or completed databases.
Module 4 - Data harmonization
During the first four years of Module 4, part of the budget will cover the support provided by Xxxxxxxxx that is crucial to data harmonization. Other costs include: 1) the salaries of the NEAR coordinator and supervisor who work together with Xxxxxxxxx to define the harmonization procedure during the first two years; 2) salary of the NEAR DB manager who then join the group to perform the actual harmonization. After the first four years, the requested budget is mainly for
the salaries of the NEAR and local DB managers. A smaller amount is asked for the central coordination and supervision.
Module 5 - Data access and user support
The requested budget for the first two years of Module 5 is needed to cover the development of user access procedures. The NEAR supervisor will outline the procedures and discuss them with the SB, which will finalize them. When the procedures are in place, the NEAR supervisor’s time will be devoted to reviewing user applications. From this point forward, users will pay NEAR to use the data. The user fees have been estimated conservatively and expressed as an average fee of 300 tsek per request. This average cost takes into account number and nature of the data (biological vs questionnaire-based data) and the type of users (public vs private sector). After the first two years, XXXX’x coordinator and supervisor will monitor NEAR’s performance and validate the usefulness of user support. After the first four years, user procedures should be in place and the workloads of the NEAR supervisor and coordinator can be reduced.
Module 6 - Maintenance and follow-up of the local databases
The costs associated with Module 6 concern the maintenance of the six local databases that are already completed (the Betula Project, GENDER, KP, Octo-Twin, SATSA and SALT). This will require less than 20% of the time of the local database manager. Completed databases without a local DB manager cost very little to maintain, and the NEAR DB manager can perform this task. For the other nine ongoing databases, the costs are for collecting new data and updating documentation. Please note that the costs associated with some databases are higher because of variation in the amount and type of data collected. The universities or other co-funders cover more than two-thirds of these costs.
Module 7 - Expansion of NEAR
This module is dedicated to promoting and expanding NEAR. The costs in this module consist of 80% of the salary of the communicator and the activities she/he will organize. She/he will update the webpage and write newsletters and scientific reports. The communicator will also organize the kick-off meeting in 2018 and the subsequent annual workshops. She/he will organize courses to spread the know-how accumulated by the NEAR OG to other researchers and infrastructures in Sweden and abroad. The cost of updating NEAR by linking it with national registers is included in this module.
Please note that:
a) SHARE is one of the infrastructures participating in NEAR. Since SHARE is also applying as a stand-alone applicant and as a member of the SWEEP consortium, its costs for data collection and communication are not included in this proposal. However, SHARE´s participation in NEAR depends on full funding from VR as requested in the stand-alone application.
b) Each university and department accounts for a different percentage of the indirect costs: KI 23%-26%, Lund 20%, BTH 35%, GU 25%, UmU 21.5%, and JU 44%.
c) The budget includes an average annual salary raise of 2.5%.
d) The matching funds from the universities and the contribution of other co-funders for years 5- 8 are estimated based on the current situation.
e) Table-compilation 4 reports the resources already available for NEAR at the six universities. We consider the previously collected data to be the most important resource.
NEAR: The National E-infrastructure for Aging Research in Sweden.
Key references & CVs
1. Xxxxxxxxx, M, de Xxxx X, Xxxxx S, Xxxxxxx LG and Xxxxxx L. Genetic and lifestyle predictors of 15-year longitudinal change in episodic memory. J Am Geriatr Soc, 2012, 60(12): p, 2308-12: 10.1111/jgs.12000.
2. Xxxxx, D, Xxxxxxxx V, Freund I and Xxxxxxx A. The changing face of cognitive gender differences in Europe. Proc Natl Acad Sci U S A, 2014, 111(32): p, 11673-8: 10.1073/pnas.1319538111.
3. Xxxxxxxxxxx, L, Xxxx HX, Ericsson K, Xxxxxx M and Xxxxxxx B. Influence of social network on occurrence of dementia: a community-based longitudinal study. Lancet, 2000, 355(9212): p, 1315-9: 10.1016/S0140-6736(00)02113-9.
4. Xxxxxxxxx, M, Xxxxxxxxxxx L, Xxxxxxxx IR, Xxxxxxxx J, Elmstahl S, Xxxxxxx B, Xxxxx G, Xxxxxxxxx M, Xxxxxxx BM, Xxxxxxxxx M, Xxxxxx I, Xxxxxxx B and Xxxx A. A longitudinal study integrating population, care and social services data. The Swedish National study on Aging and Care (SNAC). Aging Clin Exp Res, 2004, 16(2): 158-68
5. Xxxxxxxxxxx, C, Xxxxx N, Hols-Salen L, Xxxxxx S, Xxxxxxxx I, Xxxxxxxx O, Xxxxxx MG and Xxxxxxxxx M. Data resource profile: The Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD). Int J Epidemiol, 2014, 43(3): p, 731-8: 10.1093/ije/dyu057.
6. Lichtenstein, P, De Faire U, Xxxxxxxx B, Svartengren M, Xxxxxxxx P and Xxxxxxxx NL. The Swedish Twin Registry: a unique resource for clinical, epidemiological and genetic studies. J Intern Med, 2002, 252(3): p, 184-205
7. Xxxxxx, H, Xxxxxxxxx L and Xxxx A. Vitamin C intake and breast cancer mortality in a cohort of Swedish women. British journal of cancer, 2013, 109(1): p, 257-264
8. Xxxxxxxxx, B, Xxxxxxxxx K, Xxxxxxxx NL, Xxxxx SM, Xxxxx F and XxXxxxxx GE. Origins of individual differences in episodic memory in the oldest-old: a population-based study of identical and same-sex fraternal twins aged 80 and older. J Gerontol B Psychol Sci Soc Sci, 1999, 54(3): p, P173-9
9. Xxxxx, I, Xxxxxxx L, Xxxxxxxx B, Xxxxxxxxxx LA and Xxxxxxxx X. A population-based study of dementia in 85-year-olds. N Engl J Med, 1993, 328(3): p, 153-8: 10.1056/NEJM199301213280301.
10. Xxxx, CH, Xxxxxxxx B, XxXxxxxx GE, Xxxxxxxx NL and Xxxx S. Gender and health: a study of older unlike-sex twins. J Gerontol B Psychol Sci Soc Sci, 2002, 57(3): p, S168-76
11. Xxxxxx, L, Xxxxxx A, Xxxxxxxxx M, Xxxxxxxx J, Xxxxxxxxx G, Xxxxxx K, Xxxx J, Xxxxx S, Xxxxxxx J and Xxxxxxx LG. Longitudinal evidence for diminished frontal cortex function in aging. Proc Natl Acad Sci U S A, 2010, 107(52): p, 22682-6: 10.1073/pnas.1012651108.
12. Xxxxx, I, Xxxxxxxx B, Xxxxxxx S, Xxxxxxxx B, Xxxxxxxxxx LA, Xxxxxxx L, Xxxxxxx G, Xxxx A and Xxxxxxxx A. 15-year longitudinal study of blood pressure and dementia. Lancet, 1996, 347(9009): p, 1141-5
13. Xxxxxxx, D, Xxxxxx N, Xxx C, Xxxx HX and Xxxxxxxxxxx X. Lifestyle, social factors, and survival after age 75: population based study. BMJ, 2012, 345: p, e5568: 10.1136/bmj.e5568.
14. Xxxxx, A, Xxxxxxxx F, Xxxxxx R, Xxxxxxxx J, Xxxxxxxxxx J, Xxxxxxx S, Xxxxxxx BO, Xxxxxxxx J, Xxxxxxx G and Xxxxxxxxx B. An immune risk phenotype, cognitive impairment, and survival in very late life: impact of allostatic load in Swedish octogenarian and nonagenarian humans. J Gerontol A Biol Sci Med Sci, 2005, 60(5): p, 556-65
15. Xxxxxxxxx, P, Xxxxxxxx NL, Xxxxxxxxx Y, Xxxxxxxxxxx K and Xxxxxxxxx A. Risks of Myocardial Infarction, Death, and Diabetes in Identical Twin Pairs With Different Body Mass Indexes. JAMA Intern Med, 2016, 176(10): p, 1522-1529: 10.1001/jamainternmed.2016.4104.
16. Xxxx, M, Xxxxxxxx CA, Xxxxxxxxxxx L, Xxxxxxxxx B, Xxxxxxxx JA, Xxxx S, Xxxxx A and Xxxxxxxx NL. Role of genes and environments for explaining Alzheimer disease. Arch Gen Psychiatry, 2006, 63(2): p, 168-74: 10.1001/archpsyc.63.2.168.
17. Xxxxxxxxxxx, K, Xxxx A, Xxxxxxxxxxxx S, Xxxx S, Warensjo Xxxxxxx E, Melhus H and Xxxxxx X. Milk intake and risk of mortality and fractures in women and men: cohort studies. BMJ, 2014, 349: p, g6015: 10.1136/bmj.g6015.
18. Xxx, C, xxx Xxxxxxx E, Xxxxxxx L, Xxxxxxx B and Xxxxxxxxxxx X. Twenty-year changes in dementia occurrence suggest decreasing incidence in central Stockholm, Sweden. Neurology, 2013, 80(20): p, 1888-94: 10.1212/WNL.0b013e318292a2f9.
19. Xx, WL, Xxxxxxxx NL, Xxxxxx L, Xxxxxxxxx G, Xxxx XX, Xxxxx C, Xxxxxxx B, Xxxxxxx L and Xxxxxxxxxxx X. HHEX_23 AA Genotype Exacerbates Effect of Diabetes on Dementia and Alzheimer Disease: A Population-Based Longitudinal Study. PLoS Med, 2015, 12(7): p, e1001853: 10.1371/journal.pmed.1001853.
20. Fors, S, Xxxxxxxxxxx C and Xxxxxxxx O. Childhood living conditions, socioeconomic position in adulthood, and cognition in later life: exploring the associations. J Gerontol B Psychol Sci Soc Sci, 2009, 64(6): p, 750-7: 10.1093/geronb/gbp029.
CURRICULUM VITAE – XXXXX XXXXXXXXXXX
Address
Aging Research Center (ARC), Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet-Stockholm University. Xxxxxxxxxx 00, 000 00 Xxxxxxxxx
Tel: (x00) 0 000 0000; Fax: (x00) 0 0000000; E-mail: Xxxxx.Xxxxxxxxxxx@xx.xx
High degrees
1977 | BA in Medicine, University of Florence, Italy (1997 in Sweden) |
1981 | Specialist in Neurology, University of Florence, Italy (1997 in Sweden) |
1993 | PhD in Geriatric Epidemiology, Karolinska Institutet, Stockholm |
1997 | Associate professor, Karolinska Institutet, Stockholm |
2000 | Professor, Karolinska Institutet, Stockholm |
Current Positions
2017-present Head of Medical sector at Aging Research Center (ARC) 2001-present Professor at the Aging Research Center, Karolinska Institutet 2000-present Research Leader, Stockholm Gerontology Research Center
1999-present Senior physician, Geriatric Medicine, Karolinska University Hospital
Previous Positions
2007-2016 Director of Aging Research Center (ARC), KI, Stockholm 2009-2015 Director of the National Graduate School for Aging Research 2001-2006 Co-Director of Aging Research Center, Karolinska Institutet
2001-2005 Head of the Division of Geriatric Epidemiology, Dept of NEUROTEC, KI 2000-2001 Lecturer (Associate Professor) position at the Dept of NEUROTEC, KI 1996-1999 Research Scientist position at the Division of Geriatric Medicine, KI
1982-1989 Assistant Professor, Neurological Clinic, University Hospital of Florence
Publications
362 articles in peer-reviewed journals, 32 book chapters, and 13 reports. 45208 citations by Jan 2017; h-index= 100 (according to google scholar)
Supervision
Current main supervisor of 2 PhD students, and co-supervisor of 6 PhD students. Previous main supervisor of 15 PhD students.
Main supervisor of 12 Post-doc students.
Current research project leadership
2016-present PI of infrastructure NEAR
2015-present KI- Steering committee EIT-health
2012-present Leader of 4 European projects (NEW-AGE, MPI-AGE, Co-STREAM, EIT-Care) 1999-present Principal Investigator “The SNAC-Kungsholmen Study (SNAC-K)”
1999-present Member of the steering group in the national study SNAC
1996-present Scientific Coordinator of the Kungsholmen Project on Aging & Dementia
Previous research project leadership (latest)
2005-2015 Core leader & member of the Steering Committee - “Swedish Brain Power” 2010-2012 Cost of brain disorders in Europe 2010: Leader of the Dementia panel
Prizes
2014 Italian Society of Gerontology and Geriatics – “Xxxxxx Xxxxxx´s prize” 2013 Lifetime Achievement Award from the American Alzheimer’s Association 2011 Wajlit och Xxxx Xxxxxxxxx prize for AD researcher - Umeå University
2010 Xxxxxxxx'x Nordic Prize in gerontology; Sofiahemmet-Research and Education prize in dementia research
2009 Karolinska Institutet Folksams prize in epidemiologic research 2008 The Swedish Society of Medicine – “Xxxx Xxxxxxxxx’x prize”
2001 Italian Society of Neurology - Award “In memory of Prof X Xxxxxxxx”
Awards & Honors
2011 | FAS mid-term evaluation of ARC: ‘Excellent” |
2011 | KI - ERA evaluation (international panel): grading ‘Outstanding’ |
2010-15 | The Karolinska Institutet - Distinguished Professor Award |
2000-04 | Medical Research Council - Sweden – 4-year position as PhD student |
1996-99 | Medical Research Council - Sweden – 4-year Research Scientist position |
Commissions of Trust in Sweden
2012-present Member of the Research Board, Karolinska Institute 2013-14 Member of the Faculty board- Karolinska Institute
2013 Chair of the Board for national infrastructure ESS/SHARE
2010-11 Chair of the Panel-Public Health, Swedish Research Council-Medicine 2009-12 Member of the Scientific Advisory Board - Statens Folkhälsoinstitut 2008-present Reviewer for L och H Ostermans Foundation at the Karolinska Institutet 2007-10 Expert member, Social Council, Socialdepartementet
2006-10 Expert reviewer for the Swedish Research Council in Medicine (VR)
2006-12 Expert member- Xxxxxxxxxx-Königska Sjukhemmet-The Sw. Medical Society 2003-07 Expert reviewer in the Priority Committee-Public Health, FAS
International activities
2011-13 Member-IOC / Canadian Longitudinal Study on Aging
2010-13 Member- Scientific Advisory Committee of the JPND in Europe 2009-13 Member - Advisory Board of 2 European Projects
2009-12 Member / Scientific Board, Fondation de Maladie d´Alzheimer, France 2007-08 Expert reviewer - National Public Health Institutes in France & Germany 2000-present Reviewer for several Journals (Lancet; Lancet Neurology, BMJ, Am J Epi) 2004-07 Senior Member, Maxnet Aging Research Network, Xxx Xxxxxx Institute
Current major research grants
Title | Period | Amount TSEK | |
Forte-program | Aging trough life | 2017-19 | 3 000/year |
VR-Infrastruct. | SNAC-K database | 2016-17 | 2 000/year |
VR-projects | Aging without dementia | 2017-20 | 1 000/year |
VR-program | Body-mind connection | 2014-17 | 3 400/year |
Forte | FAS Center KI-SU ARC | 2011-16 | 12 000/year |
EU-project | CoSTREAM | 2016-20 | 1 000/year |
KP AND SNAC-K – PI: XXXXX XXXXXXXXXXX
1. Xxxxxxx D, Xxxxxx N, Xxx C, Xxxx HX, Xxxxxxxxxxx L. Lifestyle, social factors, and survival after age 75: population based study. BMJ 2012; 345: e5568.
2. Ferrari C, Xx WL, Xxxx XX, Xxxxxxx B, Xxxxxxxxxxx X. How can elderly APOE ɛ4 carriers remain free from dementia? Neurobiol Aging 2013; 34(1): 13-21
3. Xxxxxxx X et al (consortium). Meta-analysis of 74,046 individuals identifies 11 new susceptibility loci for Alzheimer's disease. Nat Genet 2013; 45(12): 1452-8.
4. Xxx C, xxx Xxxxxxx E, Xxxxxxx L, Xxxxxxx B, Xxxxxxxxxxx L. 20-year changes in dementia occurrence suggest decreasing incidence in central Stockholm, Sweden. Neurology 2013; 80(20):1888-94.
5. Xxxxxx R et al. - ESCAPE consortium. Effects of long-term exposure to air pollution on natural cause mortality: an analysis of 22 European cohorts within the multi-center ESCAPE project. The Lancet 2014; 383(9919): 785-95.
6. Xxxxxxxx et al. - ESCAPE consortium. Long-term exposure to ambient air pollution and incidence of acute coronary events: the ESCAPE Project. BMJ 2014; 348: f7412.
7. Xxxxxxx A, Xxxxxx EJ, Xxxx AR, Xxxxxxx J, Xxxxxxxxxxx L, Xxxxxxx L. Cognitive deficits in unipolar old-age depression: a population-based study. Psychol Med 2014; 44(5): 937-47.
8. Xxx C, Xxxxxxxxxxx L. A major role for cardiovascular burden in age-related cognitive decline. Nat Rev Cardiol 2015; 12(5): 267-77
9. Xxxxxxxx SB, Xxxxxxx G, von Xxxxxxx E, Xxxxxxxxxxx L. Temporal Trends of Functional Dependence and Survival Among Older Adults From 1991 to 2010 in Sweden: Toward a Healthier Aging. J Gerontol A Biol Sci Med Sci 2015; 70(6): 746-52.
10. Xx YT, Xxxxxxxxxxx L, Xxxxxxxx FE, Xxxx A, Xxxxxxxx MM, Xxxxx I, Xxxxxx C. Dementia in Europe: epidemiological evidence and implications for policy making. Lancet Neurol 2016;15:116-24.
11. Xx XX, Xxxxxxxx NL, Xxxxxx L, Xxxxxxxxx G, Xxxx XX, Xxxxx C, Xxxxxxx B, Xxxxxxx L, Xxxxxxxxxxx
L. HHEX_23 AA Genotype Exacerbates Effect of Diabetes on Dementia and Alzheimer Disease: A Population-Based Longitudinal Study. PLoS Med. 2015;12(7): e1001853.
12. Xxxx R, Xxxxxxxxxxx L, Xxxxxx EJ, Xxxxxx M, Xxxxxxxxx G, Xxxxxx L, et al. Effects of vascular risk factors and APOE ε4 on white matter integrity and cognitive decline. Neurology 2015; 84: 1128-35.
13. Xxxxxxxxx L, Xxxxxxxxx G, Xxxxxxx E, Xxxxxxx A, Xxxxxxx LO, Xxxxxxx L, Xxxxxxxxxxx L, Xxxx XX. The influence of negative life events on hippocampal and amygdala volumes in old age: a life- course perspective. Psychol Med 2015; 45(6): 1219-28.
14. Xxxxxxxx RC, Xxxxxxxxxx B, Xxxxxx C, Xxxxxxxx S, Xxxxx V, Xxxxxxxxxxx L. Mild cognitive impairment: a concept in evolution. J Intern Med 2014; 275(3): 214-28
15. Hooshmand B, .., Xxxxxxxxxxx L. Association of Vitamin B12, Folate, and Sulfur Amino Acids With Brain Magnetic Resonance Imaging Measures in Older Adults: A Longitudinal Population-Based Study. JAMA Psychiatry. 2016;73(6):606-13
16. Xxxxxxx B, et al. Defeating Alzheimer's disease and other dementias: a priority for European science and society. Lancet Neurol 2016;15(5):455-532.
17. Santoni G, Xxxxxxxxx A, Xxxxxxxx-Xxxxxxxxx A, Xxxxxxxx A, Xxxxxxx D, Xxxxxx A-K, Xxxxxxxxxxxx F, Xxxxxx N, Xxxxxxxxxxx L. Defining Health Trajectories in Older Adults With Five Clinical Indicators. J Gerontol A Biol Sci Med Sci, 2016, Vol. 00, No. 00, 1–7. doi:10.1093/ gerona/glw204. Advance Access publication October 19, 2016
18. Xxxxxxx D, Xxxxxx L, Xxxxxx N, Xxxxx C, Xxxxxxx L, Xxxxxxxx R, Xxxx HX, Xxxxxxxxxxx X. Effect of the Interplay Between Genetic and Behavioral Risks on Survival After Age 75. J Am Geriatr Soc. 2016 Dec;64(12):2440-2447
19. Xxxxxxxx-Xxxxxxxxx A, … Xxxxxxxxxxx X. Assessing and Measuring Chronic Multimorbidity in the Older Population: A Proposal for Its Operationalization. J Gerontol A Biol Sci Med Sci. 2016 Dec 21.
20. Xxx-Xxx Xxxx, Xxxxxx X.X. XxxXxxxxx, Xxxxxx Xxxxxxxx, Xxxxx Xxxxxxxxxxx. Association of life-long exposure to cognitive reserve-enhancing factors with dementia risk: a community-based cohort study. PLoS Med 2017, in press.
CURRICULUM VITAE – XXXXX XXXXXXXX
Address
Aging Research Center (ARC), Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet (KI) -Stockholm University (SU). Xxxxxxxxxx 00, 000 00 Xxxxxxxxx
Tel: (x00) 0 000 0000; E-mail: xxxxx.xxxxxxxx@xx.xx
Education
1991: Filosofie doktor, Phd, in Sociology. Dissertation title: Not solely by the Market: Income distribution in Sweden.
1994: Docent (associate professor), in Sociology, Stockholm.
Current positions
2002 - : Professor of Sociology at CHESS, SU and KI (on leave since 2014). 2014 - : Professor of Social Gerontology and head of section, ARC, KI and SU 2016 - : Director at Aging Research Center (ARC), KI and SU.
Previous positions
1991-97: assistant professor and, senior researcher, Swedish Institute for Social Research (SOFI) 1991-98: operative director of the 1991 Swedish Level of Living Project.
1/7 1997—30/6 1998: acting Professor of Sociology (especially level of living) at SOFI. 1999-2001: full-time commission member of the Swedish Government Welfare Commission (Kommittén Välfärdsbokslut).
2005-2011: research director at the Institute for Futures Studies, Stockholm.
Supervising experience (only completed ph.d. level listed)
M Xxxxx (2000), X Xxxxxx (2001), X Xxxxxxx (2008), X Xxxxxx Xxxxxxx (2010), S Xxxxxxxx (not related) (2011), X Xxxxxx (2016).
National appointments (selected). Member of:
2003-11: “docenturnämnden” at the Faculty of Social Sciences, Stockholm Univ. 2004-08: the research ethics board, Swedish National Board of Health and Welfare.
2005-07: the Swedish Council for Sustainable Development, appointed by Swedish Government. 2006-11: the scientific council for the Swedish Social Insurance Agency (FK).
2007-12: the board of Swedish Council for Working Life and Social Research (FAS).
2009-12: the international expert panel for Xxxxx Xxxxx- COFAS international post-doc program, Swedish Council for Working Life and Social Research (FAS).
2010: External reviewer for a new Director at CEFOS, Gothenburg University.
2013-16: and chair of the international expert panel for Xxxxx Xxxxx-COFAS2 international post- doc program, Swedish Council for Health, Working Life and Welfare (FORTE).
The board for CEDAR, Umeå University.
Opponent or thesis examination committee member for doctoral theses at Gothenburg University, KI, Royal Institute of Technology, SU, Umeå University.
International appointments (selected)
Member of the board of the Luxembourg Income Study asbl. (Swedish representative)
1998-2001: member of scientific expert panel IRISS-C/I Large Scale Facility CEPS/INSTEAD Luxembourg.
2000-2005: national expert of the European Union network COST A15.
2003-04: external reviewer for a Professorship at the Danish Institute for Social Research & Univ of Copenhagen.
Member of scientific expert group for the yearly price “the Xxxx Xxxxxxxxx Memorial Award”. 2006-2011: member of RECWOWE, Network of Excellence, 6th EU Framework Programme. 2010- : member - associate expert and Country team leader of GINI (Growing Inequalities’ Impacts), project within the 7th EU Framework Programme.
2012- : member of DRIVERS. Project within the 7th EU Framework Programme.
2009-2012: member of the Steering Committee for European Science Foundation Networking Programme: The European Children Cohorts Network (EUCCONET).
2013-2014: International Evaluation team of THL (National Institute for Health and Welfare, Finland), appointed by the Ministry of Social Affairs and Health, Finland.
2013-2015: member of the International Scientific Advisory Committee for the LIFE study. 2014- : National expert and coordinator (2015) to the European Social Policy Network (ESPN), European Commission.
2015- : member, and vice chair, of the International Scientific Advisory Board for the Joint Progamming Initiative, More Years Better Lives.
Opponent and examination committee member for doctoral theses at European University Institute (EUI), Firenze, Helsinki University, Oslo University, Turku University.
Expert member of international organizations: Academy of Finland, Belgian Science Policy, Crises Management Initiative, Danish National Institute for Social Research, Danish Social Science Research Council, Estonian Research Council, European Science Foundation, Foundation for Baltic and East European Studies, Israel Science Foundation, Xxxxxx Xxxxxxxxx Institutes, Nordic Council of Ministers, United Nations Research Institute for Social Development, World Health Organisation.
Referee for international scientific journals
Acta Sociologica, BMC Public Health, Demographic Research, Economic J, European J Public Health, European Sociological Review, Gerontology, International J Behavioral Medicine, International J Epidemiology, International J Social Welfare, J European Social Policy, J Scandinavian Studies in Criminology and Crime Prevention, Manchester School, Research on Aging, Scandinavian J Public Health, Social Forces, Social Science Research, Social Science & Medicine, Sociology of Health and Illness.
Xxxxxx and experiences of leading national or international collaboration projects.
PI of several national Swedish research projects founded by: the Swedish Council of Social Research (SFR), the Swedish Council for the Humanities and Social Sciences (HSFR), the Bank of Sweden Tercentenary Foundation (RJ), the Swedish Council for Working Life and Social Research (FAS) the Swedish Social Insurance Agency (FK), FORTE, Welfare and the Swedish Research Council (VR). Since 2007 I have led two international research programs in collaboration Brazil granted by the Swedish Foundation for International Cooperation in Research and Higher Education (STINT). Co-PI (with O Lundberg) to the NEWS-project: “Välfärds och jämlikhetspolitik I Sverige och Norden – långsiktig betydelse för folkhälsan” in collaboration with Xxx X Xxxxxx and the WHO:s Commission on social determinants of health. Swedish team leader for the FP7-programme GINI. PI for 2 large Nordic Projects “Inequality impacts” funded by the Joint Committee for Nordic Research Councils for the Humanities and the Social Sciences (NOS-HS) (~440,000€) and the SIA (Social Inequalities of Ageing) funded by NordForsk, (~3.25 Million€).
Bibliometric parameters (January 2017) - based on Google Scholar (or Xxxxxxx’x Publish or Perish, same output). Total number of citations: Citations 3922 (since 2012 1683); H index 32.
XXXXXX – PI: XXXXX XXXXXXXX
1. Xxxxxx H, Xxxxxxxx J, Xxxxxxxx R (2016) The Association of Levels of and Decline in Grip Strength in Old Age with Trajectories of Life Course Occupational Position, PLoS ONE 11(5): e0155954.
2. Xxxxxxxxx L, …, Xxxxxxxx X. (2016) Shape of the association between income and mortality. A cohort study of Denmark, Finland, Norway and Sweden in 1995 and 2003 BMJ Open 2016;6: e010974.
3. Xxxxxxxx J, Xxxxxxxx X. The shape of the association between income and mortality in old age: a longitudinal Swedish national register study. Soc Sci Med: Population Health 2016, 2.
4. Xxxxx N, Xxxx S, Xxxxxxxx J, Xxxx BA. (2016) Smoking and physical inactivity as predictors of mobility impairment during late life: Exploring differential vulnerability across education level in Sweden. Journal of Gerontology: Social Sciences. doi:10.1093/geronb/gbw090
5. Xxxxxxxx L, Xxxxx N, Xxxxxxxx J, Fors S. (2016) Trends in health expectancies among the oldest old in Sweden, 1992–2011. Eur J Public Health. pii: ckw066. [Epub ahead of print]
6. Xxxxxx G, Xxxxxxxx X. A multilevel study on ethnic and socioeconomic school stratification and health-related behaviors among students in Stockholm. J Sch Health 2015 85(12):871-9.
7. Xxxxxxxx J et al. (2015) Absolute or relative? A comparative analysis of the relationship between poverty and mortality, Int J Public Health 60, 101-110.
8. Xxxxxx, X., Xxxxxxxx, X. (2014) Welfare states and population health: The role of minimum income benefits for mortality. Social Science & Medicine: 112: 63-71.
9. Xxxxxxx M, Xxxxxxxx X. (2014) Mortality differentials by immigrant groups in Sweden: The contribution of socioeconomic position. Am J Public Health: 104(4):686-95.
10. Xxxxxx, X.X., Xxxxxxxx, X. (2014) Keeping delinquency at bay: The role of the school context for impulsive and sensation-seeking adolescents. Xxx X. Criminol 11:682-701.
11. Xxxxxxxx J, et al. (2014) ”Sweden: Increasing income inequalities and changing social relations", in Xxxxx B et al. Changing Inequalities and Societal Impacts in Rich Countries: Thirty Countries’ Experiences. Oxford: Oxford University Press.
12. Xxxxxxxx, X., (2014) “Health inequality and social justice”, pp. 339-352 in The Routledge International Handbook of Social Justice (M. Xxxxxx, xx.). London: Routledge.
13. Xxxxx X., Xxxxxxxx X., Xxxxxxx X., Xxxxxx X. (eds.) (2012) Changing Social Equality, The Nordic welfare model in the 21st century. Bristol. Policy Press, 2012 (3 chapters therein).
14. Xxxxxxx X, Xxxxxxxx ML, Xxxxxxxx X (2012) “Income inequality and self-rated health in Stockholm, Sweden. A test of the 'income inequality hypothesis' on two levels of aggregation”, Soc Sci Med, 74: 1091-1098, 2012.
15. Xxxxxxx XX, Xxxxxxxxxx P, Xxxxxxxx X. (2011) Trends in socioeconomic disparities in oral health in Brazil and Sweden. Community Dent Oral Epidemiol, 39: 204–212, 2011.
16. Xxxxxxxx, X. Xxxxxxxxxx, X-X. (2010) Societal shifts and changed patterns of poverty, International Journal of Social Welfare, 19: S25-S41, 2010.
17. Xxxxxxxxxxx, C., Xxxxxxxxxxx, M, Xxxxxxxx, X. (2010) ”Time-for-money exchanges between older and younger generations in Swedish families”, Journal of Family Issues, 31: 189-210.
18. Modin B. Xxxxxxx, X. The long arm of the family: Are parental and grandparental earnings related to young men’s body mass index and cognitive ability? Int J Epidemiol 2009 38.
19. Lundberg O. … Xxxxxxxx X. The role of welfare state principles and generosity in social policy programmes for public health: an international comparative study. Lancet 2008,372:1633-40.
20. Xxxxxxxx, X.; Xxxxxxxx, X. (eds.) (2007)Health inequalities and welfare resources: Continuity and change in Sweden. Bristol: Policy Press (and 4 chapters therein).
CURRICULUM VITAE - XXXXX X. XXXXXXXX
Address
Department of Medical Epidemiology and Biostatistics (MEB), Karolinska Institutet, Box 281, SE-171 77 Stockholm, Sweden
Tel.: (46) 0-000 00000; e-mail: Xxxxx.Xxxxxxxx@xx.xx
Education
1974 | University of Minnesota, B.A. (Magnum cum laude) |
1977 | University of Colorado, M.A. |
1980 | University of Colorado, Ph.D. (psychology, specialty: behavioral genetics; minor: |
developmental psychology, biochemistry). Title: Genetic and Environmental Factors for | |
Usage of Common Drugs; Advisor: G.E. McClearn |
Current Positions
1999- Professor of Genetic Epidemiology at the Department of Medical Epidemiology and Biostatistics, Karolinska Institutet
1997- Adjunct Research Prof., Department of Psychology, University of Southern California
Professional Positions
2008-2011 Vice Dean of Research, Karolinska Institutet
2006-2007 Chair, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet 2000-2005 Deputy Chair, Dept. of Medical Epidemiology and Biostatistics, Karolinska Institutet 1999 Senior Lecturer in Genetic Epidemiology, Dept. of Medical Epidemiology and
Biostatistics, Karolinska Institutet
1998-1999 Researcher (Forskartjänst), Karolinska Institutet
1995-1999 Division Head, Div of Genetic Epidemiology, Inst. of Environmental Medicine, KI 1989 Docent (Associate Professor) in behavior genetics, Karolinska Institutet
1989-1996 Senior Research Scientist and Affiliate Associate Professor, Center for Developmental and Health Genetics, The Pennsylvania State University
1988-1997 Research Associate Professor, Dept of Psychology, Univ. of Southern California 1986-1990 Adjunct Assistant Professor and Senior Research Associate of Human Development,
College of Human Development, The Pennsylvania State University
1982-1986 Research Associate, College of Human Development, Penn State University 1980-1988 Project Director, Department of Environmental Hygiene, Karolinska Institutet
1980-1982 Research Associate, Inst. for Behavioral Genetics, University of Colorado, Boulder 1979-1980 Statistical Software Consultant, University of Colorado Computing Center, Boulder 1977-1978 Guest Researcher, Department of Environmental Hygiene, Karolinska Institutet 1976-1980 Research Assistant, Institute for Behavioral Genetics, University of Colorado
1975 (Summer) Research Assistant, Behavioral Biology Laboratory, University of Hawaii 1973-1974 Instructor, Honors Program, University of Minnesota
Honors and awards
2014 Dobzhansky Memorial Award, Behavior Genetics Association 2009 Distinguished Professors Award, Karolinska Institutet
2007 The Xxxxx Xxxxxxx Memorial Award for Twin Research in Behavioural Genetics
2007 Distinguished Career Contribution to Gerontology, Gerontological Society of America 2007 Aston-Gottesman Lecture, University of Virginia
2004 Honorary doctorate “doctor honoris causa”, Jönköping University 2002 Fellow, Gerontological Society of America
Professional Activities (Selected) | |
2016-2018 | BSS Member-At-Large, Gerontological Society of America |
2016 | Jury Member: FWO Odyessus program, Research Fund – Flanders, Belgium |
2015 | Reviewer: MRC-UK |
2015- | Member of The Nobel Assembly at Karolinska Institutet |
2015- | Board Member: “Bedre Helse” Program, Norwegian Research Council |
2014- | Board Member: Alberta’s Tomorrow Project Advisory Board |
2014- | Board Member: German National Kohort International Advisory Board |
2014- | Board Member: CESSDA International Advisory Board |
2014- | Board Member: Council for Research Infrastructure, Swedish Research Council |
2014- | Chair of the International Advisory Board: Farr Institute and UK Health Informatics |
Research Network | |
2013-2014 | Member: Science Europe – Medical Committee |
2013 | External reviewer: German National Cohort, for Helmholtz Association, Germany |
2013 | Reviewer: Special emphasis panel – NIDDK |
2013 | External reviewer: Professor in Gerontology, Jönköping University |
2013- | Member: Wellcome Trust Peer Review College |
2012, 2013 External reviews, MRC (UK) – CFS/ME Panel, Wellcome Trust | |
2012 | External reviewer Professor and Senior Lecturer in Health Science Statistics, |
Gothenburg University | |
2011 | External reviewer: Research Council of Norway: National Review: Panel on Public |
Health and Health-related research | |
Other Activities
Keynote speaker at international conferences 17 times Invited speaker at international conferences 47 times
Invited colloquia at other universities (Erasmus 2 times, Harvard 2 times, Univ. of Southern California 2 times, Univ. of Uppsala 2 times, KTL/Univ. of Helsinki, Stockholm University) Special task force NIH/NIA: Aging and Genetic Epidemiology (1999); Mortality and change (2005)
Symposium organizer or participant at international conferences 45 times
Publications
560 manuscripts published or in press in refereed journals; H-Index = 80
Graduate Student Supervision
Primary Thesis Adviser: 13; Thesis Co-Adviser: 21, Supervision of Post docs: 19 Principal Examiner (opponent): 8, Committee Memberships (Betygsnämnd): 37
Current Research Support (As PI)
Period | Title | Funder | Amount |
2010-15 | Gene-Environment interplay of social | NIA/NIH R01 AG037985 | $3,863,118 |
contexts and aging-related outcomes | |||
2013-18 | Aging and Health | FORTE Nr 2013-2292 | 18,000,000 SEK |
2013-17 | Aging and Health | Swedish Research Council | 13,844,000 SEK |
2011-17 | Parkinson’s Disease: Genes, | Swedish Research Council | 8,050,000 SEK |
Environments and their Interplay | |||
2015-19 | PROPAG-Ageing (PI of subcontract) | EU-H2020 Grant 634821 | €901,232 |
2015-18 | ADAGE (PI of subcontract) | JPND/Swedish Research | 4,265,120 SEK |
Council
SALT AND SATSA – PI: XXXXX XXXXXXXX
1. Xxxxxx X, Xxxxxx-Xxxxxxx X, Xxxxxxxx NL. Temporal Dynamics of Motor Functioning and Cognitive Aging. J Gerontol A Biol Sci Med Sci. Jan 2016;71(1):109-116.
2. Xxxxxxxx CA, Xxxx M, Xxxxxxxxxxx K, et al. Gene-Environment Interplay in Physical, Psychological, and Cognitive Domains in Mid to Late Adulthood: Is APOE a Variability Gene? Behav Genet. Jan 2016;46(1):4-19.
3. Xxxxxxxxxxx S, Xxxxx R, XxXxxx C, Dahl Xxxxx A, Xxxxxx D, Xxxxxxxx NL. Blood glucose, diet-based glycemic load and cognitive aging among dementia-free older adults. J Gerontol A Med Sci. 2015;70(4):471-479.
4. Xxxxxx D, Xxxxx X, Xxxxxxxx NL. Gender Differences in Longitudinal Trajectories of Change in Physical, Social, and Cognitive/Sedentary Leisure Activities. J Gerontol B Psychol Sci Soc Sci. Sep 13 2016.
5. Xxxxxxxxxxx K, Xxxxx P, Dahl Xxxxx AK, et al. Association Between Sleep Characteristics and Incident Dementia Accounting for Baseline Cognitive Status: A Prospective Population- Based Study. J Gerontol A Biol Sci Med Sci. Jul 11 2016.
6. Xxxxxxxx IK, Xxxxxx AM, Xxxxxx A, et al. Apolipoprotein E ε4 genotype and the temporal relationship between depression and dementia. Neurobiol of Aging. 2015;36:1751-1756.
7. Xxxxxx-Xxxx EM, Xxxxxxxx CA, Xxxxxx D, Xxxxxxxx NL. Shared and unique genetic and environmental influences on aging-related changes in multiple cognitive abilities. Dev Psychol. 2014;50(1):152-166.
8. Xxxxxx G, Xxxxxx SE, Xxxxxxxx CA, et al. A genome-wide association study implicates the APOE locus in nonpathological cognitive ageing. Mol Psychiatry. 2014;19:76-87.
9. Xxxxxxxx CA, Xxxxxx C, Xxxx M, et al. Sortilin receptor 1 predicts longitudinal cognitive change. Neurobiol of Aging. 2013;34:1710.e1711-1710.e1718.
10. Xxxxx CF, Xxxxxx D, Xxxxxxxx NL. Pulmonary function as a cause of cognitive aging.
Psychol Sci. 2012;23(9):1024-1032.
11. Xxxxxxxx UK, Xxxxxx AM, Xxxx M, Xxxxxxx PW, Xxxxxxxx NL. Nonstroke cardiovascular disease and risk of Alzheimer disease and dementia. Alzheimer Dis Assoc Disord. Jul-Sep 2010;24(3):213-219.
12. Xxxxxxxxxxx JA, Xxxx M, Xxxxxxxxx B, XxXxxxx XX, Xxxxxxxxxxx L, Xxxxxxxx NL. Depression as a risk factor or prodromal feature for dementia? Findings in a population-based sample of Swedish twins. Psychol Aging. Jun 2009;24(2):373-384.
13. Xxxx M, Xxxxxxxx CA, Xxxxxxxxxxx L, et al. Role of genes and environments for explaining Alzheimer´s disease. Arch Gen Psychiatry. 2006;63:168-174.
14. Xxxxxxx KS, Xxxx M, Xxxxxxx CO, Xxxxxxxx NL. A Swedish national twin study of lifetime major depression. Am J Psychiatry. 2006;163:109-114.
15. XxXxxxxx GE, Xxxxxxxxx B, Xxxx S, et al. Substantial genetic influence on cognitive abilities in twins 80 or more years old. Science. 1997;276:1560-1563.
CURRICULUM VITAE – XXXXXX XXXX
Address
Unit of Nutritional Epidemiology, Institute of Environmental Medicine, Karolinska Institutet, Xxxxxx xxx 00, Xxx 000 XX-000 00 Xxxxxxxxx Xxxxxx
Tel: x00 0 000 00000, mobile: 000 0000000; e-mail: Xxxxxx.Xxxx@xx.xx
Education
1974 | MSc in Human Nutrition, Warsaw Agricultural University, Poland |
1987 | Clinical Epidemiology, National Institute of Food and Nutrition, Warszawa, Poland |
Title: Individualized dietary counseling in type 2 diabetes, Supervisor: Prof. Xxxxxxx | |
Xxxxxxxx | |
1985-87 | Pre-postdoc, Karolinska Institutet |
Professional preparation
1995-97 Visiting Scholar, Harvard School of Public Health, Boston, USA
1992 | Associate Professor (Docent) of Nutritional Epidemiology, Dept of Cancer Epidemiology |
Uppsala University, Sweden | |
1987 | Guest researcher, Karolinska Institutet |
1987 | Dr Med Sci/PhD in Human Nutrition/Clinical Epidemiology, Warsaw, Poland |
1974 | MSc in Human Nutrition (5-y program, incl. toxicology and biochemistry), University of |
Life Sciences (SGGW) Warsaw, Poland | |
Academic/Professional Appointments | |
2014- | Vice- Chairman of Institute of Environmental Medicine, KI |
2001- | Professor at Karolinska Institutet (KI), 100% research |
2008-13 | Coordinator of Epidemiology (5 Units) at Institute of Environmental Medicine (IMM), KI |
2002- | Head of Nutritional Epidemiology Unit, Department of Environmental Medicine (IMM/KI) |
2001 | Full Professor of Nutritional Epidemiology, Dept. of Medical Epidemiology & Biostatistics, KI |
1998-99 | Director of PhD studies (Studierektor), Dept. Medical Epidemiology& Biostatistics, KI |
1989-94 | Senior Researcher, Cancer Epidemiology, Uppsala University |
1988 | Senior lecturer in Human Nutrition, Uppsala University |
1978-87 | PhD- student and researcher, Dept. of Epidemiology, Natl. Inst of Food & Nutrition, Warsaw, |
Poland | |
Tutoring experience | |
Supervision of 27 PhDs - two were awarded prices for a) the best Swedish PhD thesis in epidemiology (2009);
b) Chorafas prize for the best PhD at KI (2006); Supervision of 23 Postdoctoral researchers.
International networks in academia (ongoing)
- EUROPA-University of Cambridge, UK (BCAC -the Breast Cancer Association Consortium- genetics)
- Institute of Cancer Research, London, UK (PRACTICAL-the Prostate Cancer Consortium – genetics)
- IARC/WHO, Lyon and NCI, USA (KIDney cancer -RISK consortium, genetics)
- Oxford University, Cancer Epidemiology Unit, UK (Consortium on Breast, Endometrial and Ovarian Cancers)
- Norwich University, UK and Helsinki University, Finland (EU-project -- Molecular Targets Open for Regulation by the gut flora – New Avenues for improved Diet )
- University of Birmingham, UK (Bladder Cancer Network (IBCN))
- National Institute for Public Health and the Environment, the Netherlands (Consortium on Waist Circumference and Mortality)
- Network of Cohorts in Europe and the United States, coordinated from Hellenic Health Foundation, Athens, Greece (CHANCES the Consortium on Health and Ageing)
- National Cancer Institute, Milan, Italy (STOP SMOKE Consortium)
- USA-Harvard Medical School (Pooling Project on Diet and Cancer)
- Deaconess Hospital, Prevention of Cardiovascular Diseases Unit, Boston, USA (Heart Failure)
- American Cancer Society (Consortium on Obesity, Physical Activity and Mortality)
- Memorial Sloan-Kettering Cancer Center (Epidemiology of Endometrial Cancer Consortium)
- Mailman School of Public Health, Columbia University, New York, USA (Pancreas Cancer)
- National Cancer Institute, Bethesda, (NCI Consortium of Large Prospective Cohorts)
- National Cancer Institute, Bethesda (OCAC - Ovarian Cancer Consortium- genetics)
- University of South. California (CORECT – Colorectal Cancer Consortium- genetics)
Other merits of relevance and awards
2014- | Member of AcademiaNet-Outstanding Female Academics in Europe -administered in Germany |
(nominated by the Swedish Research Council) | |
2010-14 | Distinguished Professor Award at Karolinska Institutet |
2007-12 | Strategic Research Award at Karolinska Institutet |
2007 | Ranked as 1st of many applicants for Professorship in Preventive Medicine, Uppsala University |
1999-05 | Senior Cancer Investigator Award (6 års Senior Forskartjänst, Cancerfonden) |
1993-99 | Cancer Investigator Award (6 år Forskarassistent, Cancerfonden) |
1991-92 | Junior Cancer Investigator Award (2-år Vetenskaplig experttjänst, Cancerfonden) |
National expert in diet and cancer questions for the Swedish Cancer Foundation.
Commissions of trust (selected)
2014 | External evaluator (ERA) of MRC Epidemiology, Cambridge University, UK |
2013 | External evaluator (ERA) of Cancer Epidemiology Research, Oxford University, UK |
2009- | Member, Expert Committee on Food and Nutrition, the Swedish Royal Academy of |
Science (KVA) | |
2009-12 | Member, Expert Committee, the Swedish Food Agency/Livsmedelsverket (SLV) |
2009-14 | Member of the Scientific Board, NutriNet-Santé Centre, University Paris 13, France |
2008 | External evaluator (ERA) of Cancer Epidemiology, Oxford University, UK |
2008-11 | Member, Steering Committee for Strategic Cancer Grants, the Research Council of |
Norway | |
2008-9 | External evaluator (ERA) of Center for Epidemiology and Public Health, Paris, |
France | |
2006- | National expert in Diet and Cancer research field for the Swedish Cancer Foundation |
2006-10 | Expert Committee, the Swedish Council on Technology Assessment in Health Care |
(SBU) | |
2006-09 | Member of the Scientific Board, Swedish Cancer Foundation |
2004 | External evaluator (ERA) of Department of Epidemiology, Tampere University, |
Finland |
Citations
published over 600 scientific papers (as Kuskowska-Wolk before 1992), cited 29,000 times according to Web of Science (H-index 88) in many prestigious medical journals. She is a member of the prestigious international “AcademiaNet - Outstanding Female Academics” (nominated by the Swedish Research Council)
COSM AND SMC – PI: XXXXXX XXXX
1. Xxxx A, et al. Insulin-like growth factor I and prostate cancer - a population-based case- control study. J Natl Cancer Inst 1998;90:911-5.
2. Xxxx A, et al. Long-term intake of dietary fiber and decreased risk of coronary heart disease among women. JAMA 1999;281:1998-2004.
3. Xxxx A, et al. Can measurements of IGF-1 and IGFBP-3 improve the sensitivity of prostate- cancer screening? LANCET 2000;356:1902-1903.
4. Xxxx A, et al. Long-term fatty fish consumption and renal cell carcinoma incidence in a prospective cohort of women. JAMA 2006;296:1-6.
5. Xxxxxxx CS, Xxxxxx N, Xxxx A. Vitamin B6 and risk of colorectal cancer: a meta-analysis of prospective studies. JAMA 2010 ;303:1077-83
6. Xxxxxxxxxx xx Xxxxxxxx A, Xxxxxx P, Xxxxxx XX, Xxxxx AJ, …, Xxxxxxxxxx E, Xxxxxxx BJ, Xxxx A, Zeleniuch-Jacquotte A, Xxxxxxx WC, Xxxx MJ. Body-mass index and mortality among 1.46 million white adults. N Engl J Med 2010;363:2211-9.
7. Xxxxxxx SC, Xxxxxxx J, Xxxx A. Chocolate consumption and risk of stroke in women. J Am Coll Cardiol 2011;58:1828-9.
8. Xxxxxxxxx X, … Xxxx A, et al. Genome-wide association study of glioma and meta-analysis. Hum Genet 2012;131:1877-88.
9. Xxxxxxxxxxx O, Xxxxxx M, Xxxxxxx SC, Xxxxxx N, Xxxx A. Fruit and vegetable consumption and risk of abdominal aortic aneurysm. CIRCULATION 2013;128:795-802.
10. Xxxxxx HR, … Wolk A. The Swedish mammography cohort and the cohort of Swedish men: study design and characteristics of two population-based longitudinal cohorts. OA Epidemiology 2013;1:16.
11. Xxxxxxx A, Xxxxxxx SC, Discacciati D, Xxxx A. Low-risk diet and lifestyle habits in the primary prevention of myocardial infarction in men: a population-based prospective cohort study. J Am Coll Cardiol 2014;64:1299-306.
12. Xxxxxxxxxx S, Xxxxxxxx BE, Xxxxxxxxxxx R, Xxxx A. Total antioxidant capacity of the diet and risk of age-related cataract: a population-based prospective cohort of women. JAMA Ophthalmol 2014;132:247-52.
13. Xxxxxx J, …, Wolk A. Prevention and early detection of prostate cancer. LANCET ONCOL 2014;15:e484-e492.
14. Xxxxxxxxxxx O, Xxxxxx M, Xxxxxxx SC, Xxxxxx N, Xxxx A. Alcohol consumption, specific alcoholic beverages, and abdominal aortic aneurysm. CIRCULATION 2014;130:646-52.
15. Xxxxxxxx CM, Xxxxx AJ, Xxxxxxxxxx xx Xxxxxxxx A, … Xxxxxxxxxxx K, Xxxxx E, Xxxx A, Zeleniuch-Jacquotte A, Xxxxxx P. Association between class III obesity (BMI of 40-59 kg/m2) and mortality: a pooled analysis of 20 prospective studies. PLoS Med 2014; 11.
16. Xxxxxxx V, …, Xxxx A, et al. Carcinogenicity of consumption of red and processed meat. LANCET ONCOL 2015;16: 1599-600.
17. Xxxxx SC, Xxx IM, Xxxxxxxxxx E, …, Xxx Xxxxx R, Xxxx A, Xxxxxxxx CE, Xxxxx AV. Association of Leisure-Time Physical Activity With Risk of 26 Types of Cancer in 1.44 Million Adults. JAMA Intern Med 2016;176:816-25.
18. Bellavia A, Xxxxxxx SC, Wolk A. Fish consumption and all-cause mortality in a cohort of Swedish men and women. J Intern Med 2017;281:86-95.
19. Steinhaus DA, … Xxxx A, Xxxxxxxxx MA. Chocolate intake and incidence of heart failure: Findings from the Cohort of Swedish Men. Am Heart J 2017;183:18-23.
20. Wolk A. Potential health hazards of eating red meat. J Intern Med 2017;281:106-122.
CURRICULUM VITAE―XXXXXX XXXX
Address
Department of Neurobiology, Care Sciences and Society (NVS), H1, Division of Neurogeriatrics, Novum Pl 5 14157 Huddinge, Sweden
Tel.: x00 000 00000; e-mail: Xxxxxx.Xxxx@xx.xx
Current positions | |
1991- | General Practitioner, Bergsjö-Harmånger (Hälsingland) |
2007- | Adjunct Professor, Department of Neurobiology, care sciences and society, |
Karolinska Institutet, Stockholm | |
Previous positions | |
1995 | Associate professor, department of Family Medicine, Umeå University, Sweden |
1999-2000 | Clinical lecturer, Primary health Care of Hälsingland |
1999-2007 | Researcher, Karolinska Institutet |
Awards, Commissions
- Medical Products Agency on drug treatment of dementia (1994, 2002, and 2008)
- Swedish Ministry of Social affairs, Dementia report (2003)
- Swedish Council on Technology Assessment in Health Care (SBU). Dementia project, finalized 2008.
- National Board of Health and Welfare (Socialstyrelsen : several expert commissions, i.a. National guidelines for dementia care, finalized 2010, update ongoing 2017
- Chair of steering committee, SNAC project (Swedish study on Aging and Care) ongoing
- SNAC-Nordanstig, Principal Investigator, ongoing
- Member of steering committee SveDem (Swedish quality register) ongoing
- European Alzheimer´s Disease Consortium (EADC) health economics group ongoing
- EU-projects: Previous:Consensus technical paper on cognitive impairment, Euofamcare, RightTimePlaceCare, EuroCoDe, Alcove. Ongoing: ActifCare, MIND-AD
Supervision
PhD-Candidates and postdocs: 12 (3 main supervisor, 9 co-supervisor)
Citations
Verified publications 157 2017-02-15
Citation indicators for Original Articles or Review Articles (130 in total). Based on Web of Science only.
Total number of citations | 4658 |
Field Normalized Citation Score Average | 2.39 |
Total Field Normalized Citation Score | 236.21 |
Field Normalized Share of Top Publications | 16.2% |
Sum of Latest Known Journal Impact Factor Scientific publications 2011 in total >150 | 511.27 |
SNAC-NORDANSTIG – PI: XXXXXX XXXX
1. Xxxx et al. The magnitude of dementia occurrence in the world. Alzheimer Dis Assoc Disord 2003.
2. Klarin I, Xxxx A, Xxxxxxx J. The association of inappropriate drug use with hospitalisation and mortality : a population-based study of the very old. Drugs Aging 2005;22(1):69-82.
3. … Wimo. The amount of informal and formal care among non-demented and demented elderly persons - results from a Swedish population based xxxxx.Xxx J GeriatrPsychiatry 2005.
4. Xxxxxxx BM, Xxxxxxxx G, Xxxx A, von Xxxxxxx X.Xxxxxxxxx and physical functioning in old age: differences according to living area.J Am Geriatr Soc. 2010 Oct;58(10):1855-62.
5. A Xxxx, et al. The economic impact of dementia in Europe in 2008—cost estimates from the Eurocode project. Int J Geriatr Psychiatry 2011; 26:825-32.
6. Xxxxx …Wimo. Cost-Effectiveness of a Health Intervention Program with Risk Reductions for Getting Demented: Results of a Markov Model in a Swedish/Finnish Setting. J Alzheimers Dis. 2011.
7. Sköldunger A … Xxxx X. Mortality and treatment costs have a great impact on the cost- effectiveness of disease modifying drugs in Alzheimer's disease. Curr Alzheimer Res. 2013
8. Prince M, Xxxxx R, Xxxxxxxx E, Xxxx A, Xxxxxxx W, Xxxxx CP.The global prevalence of dementia: A systematic review and metaanalysis. Alzheimers Dement. 2013;9(1)
9. Xxxx A et al. Alzheimer Disease International.The worldwide economic impact of dementia 2010. Alzheimers Dement. 2013 Jan;9(1):1-11.e3.
10. Xxxxxxxxx P, Religa D, Xxxx A, Xxxxxxx B, Eriksdotter M.The use of cholinesterase inhibitors and the risk of myocardial infarction and death: a nationwide cohort study in subjects with Alzheimer's disease. Eur Heart J. 2013 Jun 4. [Epub ahead of print]
11. Xxxx A, et al. The GERAS Study: a prospective observational study of costs and resource use in community dwellers with Alzheimer's disease in three European countries--study design and baseline findings. J Alzheimers Dis. 2013 Jan 1;36(2):385-99.
12. Xxxx A, Xxxxxxx C, Xxxxxx C, Xxxxxxxx S, Xxxxxxx R, Xxxxx RW, Xxxxxxx L, Xxxxxxxxxxxx AS, Xxxxxxxxxx X. Health economic evaluation of treatments for Alzheimer's disease: impact of new diagnostic criteria. J Intern Med. 2014 Mar;275(3):304-16. PMID: 24605810
13. Sköldunger A, Xxxxxxx J, Xxxx A, et al. Impact of Inappropriate Drug Use on Hospitalizations, Mortality, and Costs in Older Persons and Persons with Dementia: Findings from the SNAC Study. Drugs Aging. 2015 Aug;32(8):671-8. PMID: 26232101
14. Xxxx A, et al. Cohort Effects in the Prevalence and Survival of People with Dementia in a Rural Area in Northern Sweden. J Alzheimers Dis. 2015
15. Winblad B, … Xxxx A, Xxxxxxxxxx X. Defeating Alzheimer's disease and other dementias: a priority for European science and society. Lancet Neurol. 2016 Apr;15(5):455-532.
16. …Wimo How to deal with missing longitudinal data in cost of illness analysis in Alzheimer's disease-suggestions from the GERAS observational study. BMC Med Res Methodol. 2016.
17. Xxxx A, et al. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement. 2016 Aug 29. pii: S1552-5260(16)30043-7. [Epub ahead of print]
18. Xxxx A, et al. The societal costs of dementia in Sweden 2012 - relevance and methodological challenges in valuing informal care. Alzheimers Res Ther. 2016;8(1):59.
19. Wimo… Formal and Informal Care of Community-Living Older People: A Population- Based Study from the Swedish National Study on Aging and Care. J NutrHealthAging. 2017.
20. Xxxxxxxxxx X, … Xxxx X. Current issues and future research priorities for health economic modelling across the full continuum of Alzheimer's disease. Alzheimers Dement. 2017.
CURRICULUM VITAE - XXX XXXXXXXXX
Address
Department of Psychology, University of Gothenburg, Xxxxxxxxxxxx 0 , 00000 Xxxxxxxx.
Tel.: x00 00 000 0000; E-mail: xxx.xxxxxxxxx@xxx.xx.xx
Education and other training
1995 | Specialist Diploma in Clinical Psychology |
1990 | Docent (Assoc. prof), Psychology, Univ. of Gothenburg |
1985 | Ph.D in psychology, Dept. of Psychology, University of Gothenburg |
1982 | Licensed clinical psychologist, Swedish National Board of Health and Welfare |
1982 | MSc; Clinical Psychology Univ.of Gothenburg |
1975 | BA in psychology, Uppsala University |
Positions
2001-present Professor of Psychology, especially geropsychology, Department of Psychology, University of Gothenburg and Professor of Geropsychology, Institute of Gerontology, University College of Health Sciences, Jönköping
1993-2010 Adj. Professor, Department of Biobehavioral Health, College of Health & Human Development, Penn State University, USA
1987-2007 Associate Professor, Institute of Gerontology, University College of Health Sciences, Jönköping
1986 Post-doc (“forskarassistent”), Department of Applied Psychology, University of Gothenburg
1985-1987 Senior Researcher, Inst. of Gerontology, University College of Health Sciences, Jönköping; Research Associate, Dept. of Geriatric Medicine, University of Gothenburg
1975-1985 Research Psychologist, Institute of Gerontology, University College of Health Sciences, Jönköping
Affiliations, Experiences and Professional Networks
2002 - present Deputy Ass. Head of Dept./Director of postgraduate education (Third Cycle/PhD-program)
2012-2015 Chair of the University Post-Graduate Board, University of Gothenburg; 2006-08 Deputy Ass. Dean for Research and Graduate Studies, Faculty of Social Sciences, Univ. of Gothenburg.
Board member
2015-present Chair of The Scientific Advisory Board, Center for Healthy Ageing, Univ. of Copenhagen
2014-present Steering board member, Centre for Aging and Health
2014-present Board Member, Swedish National Committee for Psychological Sciences within the Royal Swedish Academy of Sciences
2008-present Advisory board member, Danish Aging Research Center, Denmark
2008-present Advisory board member, Kavli Research Center for Ageing and Dementia, Norway
2007-present Steering board member, EpiLife Centre at the University of Gothenburg 2012-2014 Elected member of steering board, Vårdalinstitutet
2008-2016 Regional Board for Ethical Vetting, Gothenburg (government appointed) 1998-2009 Steering board member, Aging Research Center (ARC), Stockholm
Scientific organizations and professional memberships
Swedish Society for Geropsychologists, SGF (first president) within the Swedish Psychological Association; Swedish Society for Neuropsychologists
The Swedish Gerontological Society (SGS); American Psychological Association (APA) The Gerontological Society of America (Fellow status)
The Behavior Genetics Association, BGA; International Society for Twin Studies, ISTS. Scientific President of the Nordic Gerontological Federation (NGF, 2014-2016 present/Associate president 2016-2018))
President of the Nordic Congress of Gerontology (2014)
Upcoming president of the IAGG-ER, International Association of Gerontology and Geriatrics Congress – European Region, 2019 in Gothenburg.
Research networks and Infrastructures
Own research group: XXX-Xxxx (xxx.xx.xx/xxxxxxxxx/xxxxxxxxxxxxxx/xxxxxxxx). The ADA-Gero group is member of the Global Aging Research Network (GARN), the IALSA network, the AgeCap Centre for Ageing and Health, and EpiLife center for epidemiological studies on mental health and physical health interaction over the life course, Univ. of Gothenburg.
Scientific journals
Editorial board member
Aging and Mental Health (2001- ), European Journal of Ageing – Social, Behavioural and Health Perspectives (2006- ), Geropsych-The Journal of Gerontopsycholgy and Geriatric Psychiatry (2010- ).
Reviewer
Int. Psychogeriatrics; Psychology and Xxxxx; J. Applied Gerontology; Aging-Clinical and Experimental Research; J. Gerontology: Psych. Sci.; Scand. J. Psychology; J. Aging & Health; Exp. Aging Research; Aging and Mental Health; Scand. J Rehab. Med.; European J Ageing– Social, Behavioural and Health Perspec.; Journal Affective Disord.; Neuropsychology (APA); Int. J Aging and Human Develop.; Scand. J Primary Health Care; Research on Aging; Mechanisms of Ageing and Development; Psychological Med.
Reviewer of research grants and proposals
Scientific Board, County of Jönköping, Swedish Foundation for Int. Cooperation in Research and Higher Education (STINT), Riksbankens Jubileumsfond (RJ; Bank of Sweden Tercententenary Foundation), FAS/Forte - Swedish Council for working life and social research, VR - The Swedish Research Council, Nordea Fund, Iceland Research Fund, EU-JPI proposals.
PI – current main research support
Decisions of and for elderly in need of support in everyday life: Prerequisites and barriers for wellbeing and autonomy. Swedish Council for Working Life and Social Research (FAS/Forte: 2012-0175).
Transition and entrance into aging, focusing on psychological health before and following retirement. Swedish Council for Working Life and Social Research (FORTE: 2013-2291). The Forte AgeCap Center on Aging and Health Swedish Council for Working Life and Social Research (FORTE: 2013-2300).
Bibliometrics
According to Publish Perish Query date: 2017-02: Papers: 295, Citations11326; h-index: 58
OCTO-TWIN – PI: XXX XXXXXXXXX
1. Better Cognition in New Birth Cohorts of 70 Year Olds, But Greater Decline Thereafter. Xxxxxxxxxxxx V, Xxxxxxxx P, Xxxxx J, Xxxxx I, Johansson B. J Gerontol B Psychol Sci Soc Sci. 2017 Jan;72(1):16-24.
2. Latent growth models matched to research questions to answer questions about dynamics of change in multiple processes.
3. Muniz-Terrera G, Xxxxxxxxxx A, Xxxxx A, Xxxxxxxxx B, Xxxxx S, Xxxxxxxx A. J Clin Epidemiol. 2016 Sep 14. pii: S0895-4356(16)30408-5. doi: 10.1016/j.jclinepi.2016.09.001.
4. Associations Between Fine Motor Performance in Activities of Daily Living and Cognitive Ability in a Nondemented Sample of Older Adults: Implications for Geriatric Physical Rehabilitation. Fauth EB, Xxxxxxxx SY, Xxxxx XX, Xxxxxx-Xxxxxxx X, Johansson B. J Aging Health. 2016 Jun 22. pii: 0898264316654674. [Epub ahead of print].
5. Trajectories of Personality Traits Preceding Dementia Diagnosis. Xxxxxx T, Xxxx J, Xxxx AI, Xxxxxxxxx B, Xxxxxxxx AM. J Gerontol B Psychol Sci Soc Sci. 2016 Mar 4. pii: gbw006. [Epub ahead of print].
6. Independent and interactive impacts of hypertension and diabetes mellitus on verbal memory: A coordinated analysis of longitudinal data from England, Sweden, and the United States. Xxxxx A, Xxxxxxx M, Xxxxx A, Xxxxxxx GM, Xxxxxxxx AM, Xxxxxxxx S, Xxxxxxx LB, Xxxxxxx DA, Xxxxxxxxx B, Xxxxx SM. Psychol Aging. 2016 May;31(3):262-73. doi: 10.1037/pag0000078.
7. I forgot when I lost my grip-strong associations between cognition and grip strength in level of performance and change across time in relation to impending death. Praetorius Xxxxx M, Xxxxxxxxx B, Xxxxxxx LB. Neurobiol Aging. 2016 Feb;38:68-72. doi: 10.1016/j.neurobiolaging.2015.11.010.
8. Gene-Environment Interplay in Physical, Psychological, and Cognitive Domains in Mid to Late Adulthood: Is APOE a Variability Gene? Xxxxxxxx CA, Xxxx M, Xxxxxxxxxxx K, Xxxxxxxxxxxx L, Dahl Xxxxx AK, Xxxxxx J, Xxxxxxxx T, Xxxxxx WS, Xxxxxxx R, XxXxx M, Xxxxxxxxxxx JM, Xxxxxxxx NL; Interplay of Genes and Environment across Multiple Studies (IGEMS) consortium. Behav Genet. 2016 Jan;46(1):4-19. doi: 10.1007/s10519-015-9761-3.
9. Same Ages, Same Genes: Same Brains, Same Pathologies?: Dementia Timings, Co- Occurring Brain Pathologies, ApoE Genotypes in Identical and Fraternal Age-matched Twins at Autopsy. Iacono D, Xxxxxxxx I, Xxxxxxxx X, Xxxxxxxx NL, Xxxxxxxxxxx L, Xxxxxxxxx B, Xxxxxxxx D, Xxxxxxx B, Xxxx M. Alzheimer Dis Assoc Disord. 2016 Apr- Jun;30(2):178-82. doi: 0.1097/WAD.0000000000000114.
10. The role of cognitive reserve on terminal decline: a cross-cohort analysis from two European studies: OCTO-Twin, Sweden, and Newcastle 85+, UK. Cadar D, Xxxxxxx BC, Xxxxxx C, Xxxxxxxxx B, Xxxxx SM, Xxxxxxxx AM, Muniz-Terrera G. Int J Geriatr Psychiatry. 2016 Jun;31(6):601-10. doi: 10.1002/gps.4366.
11. Differential Impact of Neurofilament Light Subunit on Cognition and Functional Outcome in Memory Clinic Patients with and without Vascular Burden. Xxxxxxx S, Xxxx AI, Xxxxxxxxxx C, Xxxxxxxxx B, Xxxxxx A. J Alzheimers Dis. 2015;45(3):873-81. doi: 10.3233/JAD-142694.
12. Birth cohort differences in fluid cognition in old age: comparisons of trends in levels and change trajectories over 30 years in three population-based samples. Xxxxxxxx P, Xxxxxxxxxxxx V, Xxxxx I, Xxxxxxxxxxx P, Xxxxxxxxx X. Psychol Aging. 2015 Mar;30(1):83-94. doi: 10.1037/a0038643.
CURRICULUM VITAE – XXXXXX XXXXX
Address
Department of Psychiatry and Neurochemistry at Institute of Neuroscience and Physiology, University of Gothenburg. Xx Xxxxxxxxxxx, 41345 Göteborg.
Tel. x00 00-000 0000; e-mail: xxxxxx.xxxxx@xx.xx
Education and degrees
2001-11-01 Professor in Psychiatry
1993: PhD in Medical Science/Psychiatry. Mental Disorders in the Elderly. A Population Study in 85-year-olds. Supervisors: X-X Xxxxxxxx, X Xxxxxxx.
1993-08-25 Specialist in general psychiatry 1985-05-02 M.D
1983-01-20 Examined physician (”Läkarexamen”)
Current position
Professor in Psychiatry, especially Social Psychiatry and Epidemiology, since 2001 (~70% for research). Director for the Centre for Ageing and Health (AgeCap) at the Univ of Gothenburg since 2013, and leader of the research group Epinep.
Professional positions
1994-1996 Part-time post doc Duke University
1997-1999 Xxxxx Xxxxxxx University on Cashe County study (supervisor Prof X Xxxxxxxx) 1996 Associate professor (”docent”).
1985- M.D. at the Sahlgrenska University Hospital.
1987-1992 Clinical Tutor, Dept of Psychiatry, Sahlgrenska Hospital.
1995-1999 Researcher (post-doctoral level) at the Swedish Medical Research Council. 1998-1999 Substitute lecturer.
2000-2001 Researcher (post-doctoral level) Institute of Clinical Neurosciences 1984 (Feb. - Aug.) Interruption of research: Parental leave.
Supervision
Ph.D. (10 students): X Xxxxxxxxx (1998). S Palsson (2000). X Xxxxxxxxxxx (with Prof. X Xxxxxxxxx, Dept of Geriatric Medicine, Univ. of Linköpings) (2001). S Östling (2004). X Xxxxxxxxx (2008). S Sacuiu (2009). X Xxxxxxxx (2013). N Beckman (2015). X Xxxxxxxx (2015). D Jaraj (2016). Current: 6 registered Ph.D. students (X Xxxxxxx, X Xxxxxxx, I Xxxxxx, X Xxxxxxx, X xx-Xxxxxx, X Xxxxxxx).
Ph.D co-supupervisor of 8 students.
Post-doctor (18 students): M Waern 2001-07, M Liebetrau 2000-05, S Palsson 2001-08, X Guo 2003-now, S Östling 2004-08, P Olesen 2008-10, E Xxxxxxxxx 2008-12, X Xxxxxxxxx 2008-12, S Sacuiu 2009-, X Xxxx 2012-, M Luppa 2012, X Zhi 2011-12, X Xxxxxxxxxxx 2012-, X Xxxxxxxxx
2012-, X Xxxxxx 2014-, X Xxxxxxxxx 2014-, X Xxxxxxx 2015-, X Xxxxxxxx 2015-
Scientific awards
2014: First in the ALF-evaluation of clinical medical research in Gothenburg
2015: fourth among grants from the Medical Science Branch of the Swedish Research Council. 2001: Zenith Fellows Award (240000 USD), Alzheimer's Association, USA (1st outside North America).
2002: the Danish Strömgren Award in Psychiatry.
2006: Xxxx Xxxxxxxxxx award from the Swedich Medical Society.
2013: Senior Award by the International College of Geriatric Psychoneuropharmacology. Honorary Xxxxxx Xxxxxx lecture at the British Royal Geriatric Society. Honorary lecture at the British Royal College of Geriatric Psychiatry.
Scientific production
254 papers in peer-reviewed scientific journal (114 last 8 years, mean IF 5.327), 99 reviews and book chapters, >250 published abstracts. Eleven papers with Editorials or Commentaries in their respective journals; one Editorial in the New England J Medicine, and 7 reviews in the Lancet.
Invited speaker at scientific meetings
Invited speaker to 220 international scientific meetings since 1996, including plenary talks at the Congress of Alzheimer’s disease, the Lancet conferences of Dementia (Edinburgh) and HRT (Milan). Invited as a panelist at the Nobel Week Dialogue in Stockholm, December 2014.
Citations
H-index: 57 Web of Science; 72 Publish or Perish; and 60 Scopus. Published works have been cited 12,500 times since 1993. In 2015, 1080 cited articles according to Web of Science. Most cited first-author paper: 1050 times. 27 papers are cited more than 100 times.
Referee commissions
I have had appointments as peer-reviewer for more than 50 international scientific journals including Lancet, Lancet Neurology, New England Journal of Medicine, British Medical Journal, Archives of General Psychiatry, Editor Triage Editor Am J Ger Psychiatry, Associate Editor in International Psychogeriatrics, Neuroepidemiology, and European Journal of Psychiatry.
Editorial Board in Cerebrovascular Diseases. Peer reviewer for international research councils or other grant agencies Swiss National Science Foundation, British Medical Research Council, Alzheimer's Association USA, Netherlands Council for Medical and Health Research, British Alzheimer's Society, Canadian Institutes of Health Research, Canadian Foundation for Innovation, The Wellcome Trust, UK, French Research Council.
Other activities
Diagnostic criteria: Consultant and reviewer for DSM-5, the new diagnostic criteria for mental disorders issued by the American Psychiatric Association, and for new diagnostic criteria for vascular cognitive disorders (the VASCOG criteria for vascular dementia) 2014.
Advisor to the National Institute of Health (NIH)-National Institute of Neurological Disorders and Stroke (NINDS)’s Stroke Progress Review Group meeting in Denver July 2001.
Workgroups: Women and Alzheimer’s disease for the National Institute on Ageing (NIA)/ NIH USA; Diagnostic criteria for Vascular Cognitive Impairment for the NIA / NIH in Washington 2005. The only person outside UK when the British Association for Psychopharmacology made a consensus statement regarding clinical use of drugs for dementia.
Steering boards of International Federation of Psychiatric Epidemiology, European Psychiatric Association’s Section of Epidemiology, World Psychiatric Association’s Section of Epidemiology, International Neuropsychiatric Association and VasCog.
Advisory boards: The NIHR Biomedical Research Centre for Mental Health and Biomedical Research Unit for Dementia at South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry, King’s College London, 2010-, CoLaus/PsyCoLaus Study, Laussane, Switzerland 2005-, Cashe County Study, Logan, Utah, USA 1994-2005, Asian Society Against Dementia 2016-, the French National,Fondation Plan Alzheimer 2016-
Grants: Since 2001, more than 180 000 TSEK in grants, mainly from the Swedish Research Council (Vetenskapsrådet), the Swedish Research Council for Health, Working Life and Wellfare (FAS), ALF-grants, Hjärnfonden, and four grants from the US Alzheimer Association.
H70, H85, H95+ - PI: XXXXXX XXXXX
1. Xxxxx I, Xxxxxxx L, Xxxxxxxx B, Xxxxxxxxxx L-A, Xxxxxxxx X. A population-based study of dementia in 85-year-olds. New Engl J Med 1993; 328:153-158
2. Skoog I. Sex and Swedish 85-year-olds. New Engl J Med 1996;334:1140-1141
3. Xxxxx I, Xxxxxxxx B, Xxxxxxx S, Xxxxxxxx B, Xxxxxxxxxx L-A, Xxxxxxx L, Xxxxxxx G, Xxxx A, Xxxxxxxx A. A 15-year longitudinal study on blood pressure and dementia. Lancet 1996;347:1141-1145.
4. Xxxxx I et al. Suicidal feelings in a population sample of non-demented 85-year-olds. Am J Psychiatry 1996;153:1015-1020.
5. Xxxxx I et al. Apolipoprotein E in cerebrospinal fluid in 85-year-olds. Relation to dementia, apolipoprotein E polymorphism, cerebral atrophy, and white-matter lesions. Arch Neurol 1997;54.
6. Xxxxxxx S, Skoog I. Psychotic symptoms and paranoid ideation in a nondemented population- based sample of the very old Arch Gen Psychiatry 2002;59:53-59.
7. Xxxxxxxxx D, Xxxxxxxxxx E, Xxxxxxx K, Xxxxx B, Xxxxx I. An 18-year follow-up of overweight and risk of Alzheimer disease. Arch Intern Med. 2003;163:1524-8.
8. Xxxxxxxxx Xxxxxxx A, Xxxx E, Xxxxxxxx X, Xxxxx I. The prevalence of dementia in 95-year- olds. Neurology. 2004;63:2436-8
9. Rockwood K, … Skoog I. Long-term risks of death and institutionalisation of elderly people in relation to deficit accumulation at age 70. J Am Ger Soc 2006;54:975-9.
10. Liebetrau M, Xxxxx B, Xxxxx I. Depression as a risk factor for the incidence of first-ever stroke in 85-year-olds. Stroke 2008;39:1960-5.
11. Xxxxxxx N, Xxxxx M, Xxxxxxxxx D, Xxxxx I. Secular trends in self reported sexual activity and satisfaction in Swedish 70 year olds: cross sectional survey of four populations, 1971- 2001. Brit Med J 2008; 337:151–154.
12. Xxxxxxxxx L, … Skoog I. Mid-Life Psychological Stress and Risk of Dementia: A 35-Year Longitudinal Population Study. Brain 2010;133(Pt 8):2217-24.
13. Xxxxxx S, Xxxxxxxxx D, Xxxxxxx M, Xxx X, Xxxxxxx S, Xxxxxxxxx B, Xxxxx I. Secular changes in cognitive predictors of dementia and mortality in 70-year-olds. Neurology 2010; 75(9).
14. Mielke MM, …, Xxxxx I, Xxxxxxxxx DR. The 32-year relationship between cholesterol and dementia from mid- to late-life. Neurology 2010;75(21):1888-95.
15. Xxxx E, Xxxxxxx K, Xxxxxxxxx D, Xxxxxxx S, Xxxxx M, Xxx X, Xxxxx I. Blood pressure trajectories from midlife to late life in relation to dementia in women followed for 37 years. Hypertension. 2012 Apr;59(4):796-801. doi: 10.1161/HYPERTENSIONAHA.111.182204.
16. Xxxxx D, Xxxxxx K, Xxxxxx T, Xxxxxx C, Xxxxx I, Xxxxxxxx C. Prevalence of Idiopathic Normal Pressure Hydrocephalus. Neurology 2014;82(16):1449-54.
17. Xxxxxxxxx L, Xxxxxx Xxx, Xxxxxxxxxx PR, Xxxxxxxxx T, Xxxxx M, Xxxxxxx S, Xxxxx I. Midlife personality and risk of Alzheimer’s disease and distress: a 38 year follow-up. Neurology. 2014 Oct 21;83(17):1538-44. Epub 2014.
18. Xxxx S, Xxxxxx K, Xxxx J, Xxxxxxxxxx H, Xxxxxx D, Xxxxx I, Xxxxxxx L, Xxxxxxx K, Xxxxxxxxx-Xxxxxx X. The distribution of Apolipoprotein E genotype over the adult lifespan and in relation to birth origin. Am J Epidemiol. 2015 Feb 1;181(3):214-7
19. Xxxxx I et al. A 9-year prospective population-based study on the association between the
APOE ε4 allele and late- life depression in Sweden. Biol Psychiatry 2015; 78(10):730-6.
20. Xxxx J, … Skoog I, Östling S. Calcium supplementation and risk of dementia in women with cerebrovascular disease. Neurology. 2016; 87(16):1674-1680
CURRICULUM VITAE―XXXXXX XXXXXXXX
Address
Centre for Demographic and Ageing Research, Umeå University, SE-90187 Umeå, Sweden
Tel.: x00 00 000 00 00; e-mail: xxxxxx.xxxxxxxx@xxx.xx,
Positions since 1995
Assistant, Department of Geography, Umeå university, 1982
Doctoral Student, Umeå university, 1983 -1988
Research Assistant, Umeå university, 1990-1994
Senior Lecturer, Umeå university, 1995 – 2002
Associate Professor in Social and Economic Geography, Umeå university, 1997
Director, Analysis Division, Institute for Growth Policy Studies (ITPS), 2001- 2003
Professor at the Department of Social and Economic Geography, Umeå Univ. 2002 -
Director of the research unit, Centre for Demographic and Ageing Resarch, 2015 -
Academy memberships and Awards
Royal Swedish Academy of Science, member since 2012 in Class 5
Royal Skyttean Academy Award for young and successful researchers, 1997
Academic exams
BA, Lund university, Human Georaphy, 1981
PhD in Human Geography, Umeå university, 1988
Academic assignments
• Country team leader, Sweden Survey of Health Ageing and Retirement in Europe
• Chair of the Board of the Demographic Database, Umeå University 2012 –2015
• Chair of the board of Centre for Regional Science (CERUM) 2002 – 2008
• Member of the Board of the Research Council for Working Life and Social Sciences (FAS) 2007-2012
• Chair of the Committee for Labour Market Research, Research Council for Working Life and Social Sciences (FAS) 2007 – 2012
• Member of the “Steering Committee for Population Commission of the International Geographical Union (IGU)”
Selection of external research grants
Research foundations | Projects | SEK |
Riksbankens jubileumsfond | ” De nya utvandrarna” | 1 460 000 |
SIDA/Sarec | ”Getting ready for life” | 851 000 |
Vetenskapsrådet | ”Varför bor de flesta kvar? ” | 1 770 000 |
SIDA/Sarec | “Traditional medicine” | 900 000 |
FORMAS (co-applicant) | ”När arbetsmarknaden spelar roll” | 1 575 000 |
XXXXXXX (co-applicant) | ”Rörlighet och näringslivsdynamik” | 1 560 000 |
FAS (co-applicant) | ”Invandrarföretagnde och gentrifiering” | 1 500 000 |
SIDA/Sarec | ”Moving to Health” | 1 000 000 |
FAS | ”De östeuropeiska svenskarna” | 2 400 000 |
Vetenskapsrådet | ”Bort från periferin” | 2 430 000 |
Vetenskapsråd. (co-applicant) | “Ageing and Living Conditions” | 80 000 000 |
Vetenskapsrådet(co-applicant) | “Ojämlikhet och hälsa i hög ålder” | 3 000 000 |
Riksbankens jubileumsfond | “Family network, life style and health” | 2 900 000 |
Vetenskapsrådet | “SHARE” wave 5 | 14 000 000 |
Forte | ”Paths to Healthy and Active Ageing” | 18 000 000 |
Vetenskapsrådet | “SHARE” wave 6 and 7 | 34 000 000 |
Forte (co-applicant) | “Elderly immigrants | 2 900 000 |
Forte (co-applicant) | “Moving out from the city” | 2 880 000 |
Editorial boards
Population Space and Place
Cybergeo – European Geographical Journal
Referee commissions for international journals, including:
Xxxxxxxxxxx Xxxxxxx, Population Space and Place, Demography, Demographic Research, Migration Letters, Scandinavian Journal of Public Health, Environment and Planning A, International Migration, Journal of Health and Place, European Journal of Spatial Development, International Sociology, Transactions of the Institute of British Geographers, Global Health Action.
International conferences Main organizer of
- International Conference on Mobility and Successful Ageing, Umeå, 2009
- “Data for longitudinal ageing research”, conference co-organised with National Institute of Ageing, Umeå
- 6th International Conference on Population Geographies, Umeå, 2011
Keynote speaker
- Empty Country and Lively Cities? Spatial Differentiaion in the Face of Demographic Change. International conference, Leibniz Gemeinschaft, Berlin, May 7-8, 2009.
Guest lectures at universities abroad
Universidade de Lisboa, 1994, York University, Toronto 1997, Universität der Bundeswehr, Hamburg, 1998, Universidad Nacional Autonoma de Nicaragua, Leon 2004 and 2013, Köpenhamns universitet, 2006, University of Tartu, 2009, Jacobs University, Bremen, 2010, National Institute for Ageing, Washington D.C. 2011, Centre for Population Change, Edinburgh 2011, University of Ulster, 2012, St Andrews 2014, Vienna Institute of Demography, Wien 2015, Queen’s University, Canada 2016.
PhD supervision:
Xxxxx Xxxxxxxxx (2000), Xxxxxx Xxxxxxx (2001), Xxxxxxx Xxxxxxx (2004), Xxxxx Xxxxxxxxx (2006), Xxxx Xxxxxxxx (2007), Xxxx Xxxxxxxxx (2009), Xxxxxxx Xxxxx (2009), Xxxxxx Xxxxxxxx
(2009), Xxxxxxxxx Xxxxxxxxxxxxx (2010), Xxxxxxxxx Xxxxxxxx (2010), Xxxxxxxxxxx Xxxxxxx
(2010), Xxxx Xxxxx (2011), Xxxxx Xxxxxxxx (2011), Xxxxx Xxxxxxxx (2012), Xxxx Xxxx (2013),
Xxxxxxx Xxxxxxxxxx (2015).
SHARE-SWEDEN – PI: XXXXXX XXXXXXXX
1. Avendano M, Xxxxxxx MM. Stroke disparities in older Americans: is wealth a more powerful indicator of risk than income and education? Stroke 2008;39(5):1533-40.
2. d'Uva TB, X'Xxxxxxx O, van Doorslaer X. Differential health reporting by education level and its impact on the measurement of health inequalities among older Europeans. Int J Epidemiol 2008;37(6):1375-83.
3. Xxxxxx A, Xxxxxxx C, Xxxxxxxxx-Xxxx X, Xxxxxxxx C, Xxxxxxx MI, Xxxxxx J, Xxxxxx M, Kunst AE, Xxxxxxx X. Inequalities in health by social class dimensions in European countries of different political traditions. Int J Epidemiol 2008;37(5):1095-105.
4. Allin S, Xxxxxxxx C, Mossialos E. Measuring socioeconomic differences in use of health care services by wealth versus by income. Am J Public Health 2009;99(10):1849-55.
5. Xxxxxxxx M, Xxxxxxx MM, Xxxxx J, Xxxxxxxxxx JP. Health disadvantage in US adults aged 50 to 74 years: a comparison of the health of rich and poor Americans with that of Europeans. Am J Public Health 2009;99(3):540-8.
6. Xxxxxxx et al. The intersection of sex, marital status, and cardiovascular risk factors in shaping stroke incidence: results from the health and retirement study. J Am Geriatr Soc 2009.
7. Xxxxxx-Xxxxxxxx B, et al. Prevalence of frailty in middle-aged and older community- dwelling Europeans living in 10 countries. J Gerontol A Biol Sci Med Sci 2009;64(6).
8. Xxxxxx-Xxxxxx R, et al. A frailty instrument for primary care: findings from the Survey of Health, Ageing and Retirement in Europe (SHARE). BMC Geriatr 2010.
9. Xxxxxxx MM, Xxxxxxx J, Xxxxxx SE, Xxxxxx KK, Xxxxxxxx M. Depressive symptoms predict incident stroke independently of memory impairments. Neurology 2010;75(23).
10. Skirbekk V, Xxxxxxxxxx E, Xxxxx D. Variation in cognitive functioning as a refined approach to comparing aging across countries. Proc Natl Acad Sci U S A 2012;109(3):770-4.
11. Xxxxxx-Xxxxxx R, Xxxxx XX. The frailty index in Europeans: association with age and mortality. Age Ageing 2012;41(5):684-9.
12. Xxxx XX, Xxxxxxxxxx BD, Xxxxxxx I, Xxxxxxxx M, Xxxxxxxxxxx SV, Xxxxx LM, Xxxxxxx MM. Stroke incidence in older US Hispanics: is foreign birth protective? Stroke 2012;43(5).
13. Xxxxxxxx J, Xxxxx T, Xxxxxxxxxx M, Xxxxxxx X. Depressive symptoms and psychosocial stress at work among older employees in three continents. Global Health 2012;8:27.
14. Xxxx KS et al. Participation in productive activities and depression among older Europeans: survey of Health, Ageing and Retirement in Europe (SHARE). Int J Geriatr Psychiatry 2013.
15. Börsch-Supan A, Xxxxxx M, Xxxxxxx C, Xxxxx T, Xxxxxxxxxx J, Malter F, Schaan B, Xxxxx S, Xxxxx S. Data Resource Profile: The Survey of Health, Ageing and Retirement in Europe (SHARE). Int J Epidemiol 2013;42(4):1-10.
16. Xxxxxxxxx S, et al. Do unequal societies cause death among elderly? A study of the health effects of inequality in Swedish municipalities, 2006. Global Health Action 2013.
17. Xxxxx S, Xxxx RG, Xxxxxx X. Early life conditions, adverse life events, and chewing ability at middle and later adulthood. Am J Public Health 2014;104(5):e55-61.
18. Xxxxxxxx M, Xxxxx M, Xxxxxx R, Xxxxxxxxx N. Receiving instrumental support in late parent- child relationships and parental depression. J Gerontol B Psychol Sci Soc Sci 2014 Sep 23.
19. Leist AK, Xxxxxx P, Xxxxxxxx X. Do economic recessions during early and mid-adulthood influence cognitive function in old age? J Epidemiol Community Health 2014;68:151-8.
20. Xxxxxxxxx S, Xxxxx J, Xxxxxx D, Xxxxxx T, Xxxxxx E. Health, functioning, and disability in older adults--present status and future implications. Lancet 2015 Feb 7;385(9967):563-75.
CURRICULUM VITAE―XXXX XXXXXX
Address
Department of Radiation Sciences and Integrative Medical Biology, Umeå University, SE-901 87 Umeå.
Tel.: x00 00 000 00 00; e-mail: xxxx.xxxxxx@xxx.xx
Current and select past academic appointments and qualifications
January 2006–Professor of Neuroscience (Medical Faculty, Umeå University) 2012-2017 Xxxxxxx & Xxxxxx Xxxxxxxxx’x Research professorship in medicine 2001- Director of Umeå Centre for Functional Brain Imaging (UFBI)
1999-2005 Professor of Psychology at Umeå University and Researcher in Neuropsychology (supported by the Swedish Research Council)
2007–2011 Guest Professor (II) in Bergen, Norway 2012– Guest Professor (II) in Oslo, Norway
1994-1995 Post-doc Rotman Research Institute, Toronto, Canada 1993 PhD, Psychology, Umeå University
1996 Docent, Psychology, Umeå University
1986-1989 Basic University Studies, Clinical Psychology Program, Umeå University, Sweden.
Supervision
PhD = 22 (completed as main & co-supervisor), Post-doc (past & current) = 10.
Awards
- Member of The Royal Swedish Academy of Sciences (2008, Member 1574)
- KA Wallenberg Scholar (2009, 2016)
- Mångbergs Prize in Neural Sciences, Umea University, Sweden (2008)
- Gustafsson Prize in medicine from The Royal Swedish Academy of Sciences (2007).
- Brain Research Interactive Young Investigator Award (2002).
- Award from the Royal Skytteanska Society to ‘eminent young researchers’ (1994).
-
Commission of trust - current and past
- Medlem Umeå Universitetsstyrelse 2016 --
- Ordinarie ledamot anställnings- och docenturnämnden, MedFak, UmU (2014- 16)
- Ledamot av Hjärnfondens vetenskapliga råd (2013-15)
- Ledamot i medicinska fakultetsnämnden, UmU (2012-14)
- Ledamot i forskningsnämnden, med fak, UmU (2012-14)
- Ledamot av styrelsen för NevroNOR, Norge (2006-07)
- Medlem av Centrum för Idrottsforsknings styrelse (2006-08)
- Beredningsgrupp Vetenskapsrådet (2003-05)
Scientific Productivity (xxxx://xxxxxxx.xxxxxx.xx/xxxxxxxxx?xxxxxx0X0XxxXXXXX&xxxxx)
- Total: >200 original peer-reviewed papers
- Total number of citations: >22 600
- Top cited paper > 3400 citations
- H-index = 67
Select Major Grant Support
2017 | Lifebrain. Horizon 2020 EU, Nyberg PI for Umeå node (Total = 10 million EURO/5yrs). |
2016 | Wallenberg Scholar (renewal). From Xxxx och Xxxxx Xxxxxxxxxxx stiftelse (15 M |
SEK). | |
2013 | Cognition, brain, and aging (COBRA): A longitudinal multimodal imaging study. Xxxx |
Xxxxxx XX. From Swedish Science Council (5 M SEK; 1M/year, 2013-17). | |
2013 | Human Brain Project (EU flagship project). 1/80 groups (Nyberg PI working memory). |
2012 | Xxxxxxx & Xxxxxx Xxxxxxxxx’x Research professorship in medicine (15 M SEK, 2013- |
17) from the Royal Swedish Academy of Sciences. | |
2010 | Metabolic Markers for Neurodegenerative diseases. Xxxxxxxx, X., Xxxxxx L., |
Xxxxxxxx, L., Xxxxxx, T., Xxxxx, X. EP-foundation (40 M SEK, 2010-14). | |
2010 | Cognitive and motor functions in health and disease during the life span. Joint strategic |
grant KI-UmU from Swedish Science Council; L Nyberg PI for Umeå University. | |
2010 | Early cognitive markers of dementia. From King Xxxxxx X:s and Queen Xxxxxxxx’x |
Freemason Foundation (1 M SEK; 2010-14) | |
2010 | Swedish Brain Power (PI, Xxxxx Xxxxxxx; Xxxxxx leader for Neuropsychology core), |
support from Xxxx & Xxxxx Xxxxxxxxxx Foundation (20 M/year, 5 yrs). | |
2009 | Wallenberg Scholar. From Xxxx och Xxxxx Xxxxxxxxxxx stiftelse (15 M SEK). |
2007 | Cognitive neuroscience: Aging, genetics, memory and executive functions. Long-term |
support to leading scientist from the Swedish Science Council (1 M SEK/year, 5 yrs). | |
2007 | Research-dedicated magnetic resonance imaging (MRI) scanner at Umeå University. |
From Xxxx och Xxxxx Xxxxxxxxxxx stiftelse (18.5 M SEK). | |
2006 | Ageing and Living Conditions 2006-2015: Xxxxxx Xxxxxxxxxx, Xxxx Xxxxxx et al. |
Linneaus grant from the Swedish Science Council (total 80 M SEK). | |
2005 | Memory, genetics, brain imaging and early diagnostics. (2005-2010). X-X Xxxxxxx, X |
Xxxxxx, X Xxxxxxx, X Xxxxxxxx. Support from the Swedish Science Council to Strong | |
Research Environment – Betula Project (22 M SEK). | |
2005 | Nordic Centre of Excellence Programme in Cognitive Control (2005-2010). Xxxx |
Xxxxxx (principal investigator, PI). Supported by NOS-HS. (20 M SEK). |
THE BETULA PROJECT – PI: XXXX XXXXXX
1. Xxxxx, X. xx al. (in press). Novel genetic loci underlying human intracranial volume identified through genome-wide association. Nature Neuroscience.
2. Xxxxxx, X. et al. (2016). Dopamine D2 receptor availability is linked to hippocampal-caudate functional connectivity and episodic memory. Proceedings of the National Academy of Sciences, USA, 113, 7918-23.
3. Xxxxxxx, KB., et al. (2016). Neurodevelopmental origins of lifespan changes in brain and cognition. Proceedings of the National Academy of Sciences, USA, 113, 9357-62.
4. Xxxxx, M. A., ..., Xxxxxx, L., ..., Xxxxxxxxxx, M. (2016) Novel genetic loci associated with hippocampal volume. Nature Communications.
5. Xxxxxxxx, X., Xxxxx, E. K., Xxxxxxx, X., Xxxxxxxxx, X., & Xxxxxx, X. (2015). Neurocognitive architecture of working memory. Neuron, 88, 33-46.
6. Xxxxx, D. P. et al. (2015). Common genetic variants influence human subcortical brain structures. Nature, 520, 224-229.
7. Xxxxxx, X. et al. (2015). Genetic contributions to variation in general cognitive function: a meta-analysis of genome-wide association studies in the CHARGE consortium (N=53 949). Molecular Psychiatry, 20, 183-192.
8. Xxxxxx, X., Xxxxx, X., & Xxxxxx, X. (2014). When More Becomes Less: Elevated Hippocampal Resting-State Connectivity Underlies Deficient Neurocognitive Function in Aging. Proceedings of the National Academy of Sciences, USA, 111, 17654-17659.
9. Pudas, S., … Xxxxxx, X. (2013). Brain characteristics of individuals resisting age-related cognitive decline over two decades. Journal of Neuroscience, 33, 8668-8677.
10. Xxxxxxxxx, M., de Xxxx, X., Xxxxx, S., Xxxxxxx, X.-X., Xxxxxx, X. (2012). Genetic and lifestyle predictors of 15-year longitudinal change in episodic memory. Journal of the American Geriatric Society, 60, 2308-2312.
11. Xxxxxx, X., et al. (2012). Memory aging and brain maintenance. Trends in Cognitive Science, 16, 292-305.
12. Ekman U, … Xxxxxx X. (2012). Functional brain activity and presynaptic dopamine update in patients with Parkinson-s disease and mild cognitive impairment: a cross-sectional study. Lancet Neurology, 11.
13. Xxxxxxx, X., Xxxxxx, X., et al. (2011). Effects of working-memory training on striatal dopamine release. Science, 333, 718.
14. Xxxxxx, X., et al. (2010). Longitudinal evidence for diminished frontal-cortex function in aging. Proceedings of the National Academy of Sciences, USA, 107, 22682-22686.
15. Xxxxxx, X., Xxxxxxxxxxx Xxxxx, X., Xxxxxxx, X., Xxxxxxx, X., & Xxxxxx, X. (2008). Transfer of learning after updating training mediated by the striatum. Science, 320, 1510-1512.
16. MacDonald SWS, Xxxxxx L, Xxxxxxx L. Intra-individual variability in behavior: links to brain structure, neurotransmission and neuronal activity. Trends in Neurosciences 2006 29.
17. Xxxx X, … Xxxxxx X. (2006). Reduced functional brain activity response in cognitively intact apolipoprotein ε4 carriers. Brain, 129,1240-1248.
18. Xxxxxx L, et al. Neural correlates of training-related memory improvement in adulthood and aging. Proceedings of the National Academy of Sciences, USA, 2003, 100, 13728-13733.
19. Xxxxxx, X., & Xxxxxx, X. (2000). Imaging cognition II: An empirical review of 275 PET and fMRI studies. Journal of Cognitive Neuroscience, 12, 1-47.
20. Xxxxxx, X., XxXxxxxx, A.R., Xxxxx, X., Xxxxxxx, X.-X., & Xxxxxxx, X. (1996). Activation of medial temporal structures during episodic memory retrieval. Nature, 380, 715-717.
CURRICULUM VITAE―XXXX X. XXXX XXXXX
Address
Institute of Gerontology, School of Health Sciences, 551 11 Jönköping
Tel.: x00 00 000 000; mobile: x00 000 000 000; e-mail: xxxx@xx.xx
Degrees
- Associate Professor (gerontology), School of Health Sciences, Jönköping University, 2013
- Ph.D. Gerontology, School of Health Sciences, Jönköping University, 2009
- Body Mass Index, Cognitive Ability, and Dementia - Prospective associations and methodological issues in late life
- B.A. Psychology, Växjö University (currently Linneaus University), 2003
Postdoctoral Research
2011-2014 Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Sweden.
2011-2014 Centre for Cognitive Ageing and Cognitive Epidemiology, University of Edinburgh (4.5 months in total).
Appointments
- Research leader of Aging Research Newtork – Jönköping (XXX-X) (together with Xxxxxxx Xxxxxxxx), 2015-
- Future Leader of Aging Research in Europe (FLARE) II fellow – 2011-2014
- Member of the board of Swedish Gerontological Association (Sveriges Gerontologiska Sällskap), 2011-2013
Grants
XXX | Xxxx | Xxxxx (as Principal Investigator) |
2.100.000 | 2016-2018 | Causes and consequences of body fat changes across the adult life |
span. VR | ||
75.000 | 2013 | Understanding fat mass changes in old age by studying epigenetics. |
Funded by the Geriatric Foundation at Karolinska Institutet | ||
50.000 | 2013 | Unravelling the Obesity Paradox – A Multifactorial Longitudinal |
Approach. Xxx and Xxxx Xxxxxxxx’x foundation | ||
137.950 | 2013-2014 | FLARE2 postdoctoral research visit at Center for Cognitive Ageing |
and Cognitive Epidemiology. Totally 5.5 months during (FAS Dnr | ||
2013-1203). | ||
2.400.000 | 2011-2014 | Post-doc funding. Weight trajectories and health in late life: a life |
course perspective. Future Leaders of Ageing Research in Europe | ||
(FLARE), funded by Swedish Council for Working Life and Social | ||
Research (FAS Dnr 2010-1852) | ||
1.360.000 | 2010 | Post-doc funding, Longitudinal associations between changes in |
weight, cognitive functions, and dementia. Funded by Swedish | ||
Council for Working Life and Social Research (FAS Dnr 2010-0704). | ||
(Cancelled since June 30th due to other funding accepted, see above). | ||
250.000 | Smaller grants (<50.000 SEK), such as from Xxx and Xxxxx Xxxxxx |
foundation, Karolinska Institutet’s funds, etc.
XXX | Xxxx | Xxxxx (as Co-Investigator) |
18.000.000 | 2014-2019 | Program funding: Buffering effects of lifestyle and the environment |
on healthy aging – a lifespan approach. FORTE. PI: X Xxxxxxxx | ||
12.000.0000 | 2014-2017 | Program funding: Health development in late life - Towards a |
functional care of older people with multiple illnesses and | ||
disabilities through understanding patterns of change and their | ||
causes. VR. PI: X Xxxxxxxx. | ||
1.080.000 | 2014-2017 | Funding for doctoral student: Shift work and sleep disruption as |
contributors to cognitive decline and dementia. Funded by | ||
Karolinska Institutet. PI: X Xxxxxxxx. | ||
960.000 | 2012-2015 | Funding for doctoral student. Understanding co-morbidities among |
late-onset disorders: the pleiotropic role of specific genes. Funded | ||
by Karolinska Institutet for doctoral students. PI: Xxxxx Xxxxxxxx. |
Supervision of students
Main supervisor of doctoral students (finished): Xxxxx Xxxxxxxx (2016, JU) Co-supervisor of doctoral students (finished): Xxxx Xxxxxxxx (2013, JU)
Co-supervisor of doctoral students (current): Xxxxxxxx Xxxxxxxxxxx (KI), Xxxxx Xxxxxxxx (KI), Xxxxxxxx Xxxxxx (UCR)
Supervisor of X.Xx. (finished): Xxxxxxxx Xxxxxxxxxxx (2012, KI)
Publications and presentations
In total 32 peer review publications, and 6 under review. Four book chapters, of which single author on one. About 60 oral and poster presentations at national and international conferences, chair twice, organizer twice, and invited lecturer five times.
Reviewer assignments
Age and Ageing, BioMed Central, Health Psychology, Aging and Mental Health, International Journal of Obesity, Journal of Aging and Health, Behavior Genetics, European Journal of Cardiovascular Nursing
Bibliometric
H-index 10, i10-index 18, according to google scholar
GENDER – PI: XXXX X XXXX
1. Xxxxx XX, Xxxxxx D, Xxxxxxxx MS, Xxxxx K, Xxxxxxxxxxx K, Xxxx M, ... Pedersen NL. Facets of subjective health from early adulthood to old age. J Aging Health, 2016.
2. Xxxxxxxx IK, et al. (2015). Apolipoprotein E ε4 genotype and the temporal relationship between depression and dementia. Neurobiology of aging, 36(4), 1751-1756.
3. Xxxxx EB, et al. (2014). Comparing changes in late-life depressive symptoms across aging, disablement, and mortality processes. Developmental psychology, 50(5), 1584.
4. Fristedt S, Dahl AK, Xxxxxxxxxx A, Björklund A, Xxxxxxx T. (2014). Changes in community mobility in older men and women. A 13-year prospective study. PloS one, 9(2), e87827.
5. Xxxxxxxx CA, Xxxxxx C, Xxxx M, Xxx L, Xxxxxxxxx B, Xxxxxxxx B, Xxxxxxxx NL.
Sortilin receptor 1 predicts longitudinal cognitive change. Neurobiology of aging, 2013.
6. Xxxx C, et al. (2013). Genetic variants from lipid-related pathways and risk for incident myocardial infarction. PloS one, 8(3), e60454.
7. Xxxxxxxx NL, Xxxxxxxxxxx K, Dahl AK, et al. (2013). IGEMS: The consortium on interplay of genes and environment across multiple studies. Twin Research and Human Genetics 16.
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CURRICULUM VITAE―JOHAN BERGLUND
Address
Blekinge Institute of Technology, Department of Health Science, 371 79 Karlskrona, Sweden
Tel.: +46 734 223530; e-mail: johan.sanmartin.berglund@bth.se
Degrees
2002 | Associate professor in General Medicine, Lunds University |
1996 | PhD, Faculty of Medicine, Lund University, Lund, Sweden. |
1994 | Specialty in General Medicine, Karlskrona, Sweden |
1990 | Medical doctor (MD), Växjö. Sweden |
1988 | Medical practitioner, Faculty of Medicine, Lund University, Lund |
Current position
Professor in Public Health. Department of Health Science, Blekinge Institute of Technology Director/senior consultant Clinical Research Center, Clinical Research Center, Blekinge Centre of Competence, Sweden
Awards
- Astra LM, Swedish General Medicine Fellowship 1991 & 1992.
- Bayer, Swedish General Medicine Fellowship 1994.
- Orion-Farmos, Swedish General Medicine Fellowship 1994.
- The Swedish Society of Medicine; Olof Johannisson prize for important research 1996.
- The Domagk award 1997.
- Eklund foundation 2016.
Teaching
Lecturer at Lund University, Blekinge Institute of Technology and Mid Sweden University – in basic, advanced and research levels of education:
• Public Health
• Health Promotion
• Epidemiology
• Health Communication
• Research metodology
• Applied Health Technology
Main research areas:
• Public Health
• Ageing and Care
• Infectious diseases
• Applied Health Technology - Gerontechnology
Publications
117 peer-reviewed articles published in international journals.
More than 200 presentations and invited speeches / moderator nationally and internationally. Google Scholar 2479 citations, H-index 25, i10-index 44 (feb 2017)
Reviewer for 10 scientific journals.
Supervisor / Grants
11 completed doctoral degree (PhD) and 12 ongoing PhD-students.
Received average amount of external research funding last 5 years, >5 million SEK/y.