Activities carried out and results. (1) An expert group on Education and Training was formed. The members of the expert group of who develop ideas in relation to education and training and provide guidance on the development of WP III activities are the following: - ARZIMANOGLOU, Coordination (FR, Lyon);
Activities carried out and results. 5.1 Initial fact finding and review Initial fact finding and review (WP4T1) was conducted in phase 1 of the project to review current good practices and policy guidelines with regards to citizen science and DIY approaches. A collection of guidelines and scientific publications is publicly available on ECSA website (xxxxx://xxxx.xxxxxxx-xxxxxxx.xxx/blog/collection-citizen- science-guidelines-and-publications). The review provided an overview of existing guidelines and supporting resources, which provided evidence base for the elaboration of the policy briefs. For the case of the BioBlitz methodology, documents that have been identified were mainly user guides for running BioBlitz activities focusing on citizen science practitioners. Although a couple of such guidelines exist, the consultation with practitioners improved the understanding and knowledge over the broad variety of BioBlitz activities that is currently being carried out, both in terms of format and duration of events as well as regarding the areas, goals and desired outcomes of the study. Since an informative documentation of BioBlitz activities along with their potential for public engagement and policy in a format addressing decision makers was missing, the policy brief was oriented to provide this content. In addition, the fact finding and review helped to identify potential contributors to the policy brief. For the case of DIYBio, documents identified included general descriptions of the actors, practice and places in which DIY biology and biotechnology is conducted in Europe and the United States, academic and popular science discussions on specific aspects of the practice, such as ethical or security questions, as well as policy briefs. A public reference database was created on Zotero (xxxxx://xxx.xxxxxx.xxx/groups/doing_it_together_science/items), in which additional relevant articles were collected. Since the descriptions of the DIYBio movement in academic articles were rather fragmented, and no previous European policy briefs on DIYBio existed, it was decided to focus the present policy brief on furthering the understanding of DIYBio as a movement promoting openness and inclusiveness, new ways to organize moral deliberations, innovation in business and education.
Activities carried out and results. The total length of this section depends on the specificity of the deliverable. Activities carried out • Describe the activities carried out and the methodology followed Results • Describe the results giving all the details necessary to make the deliverable. Include all the necessary diagrams, tables and figures with clear captions coherent with the text and easily identified. • Make a critical analysis of the results. Highlight the major achievements and the pending issues. • A deliverable might contain results that do not necessarily represent a success. If this is the case, please explain the reasons for failing the deliverable’s objectives. If applicable, suggest contingency plans and the need for the issue of a new version of the same deliverable. Such request will then be submitted to the EC Project Officer.
Activities carried out and results. Activities carried out Our previous work helped to establish international recommendations for the neuropathologic work-up of epilepsy surgery human brain samples (Blumcke et al. 2016). The second step will be to develop SOPs for tissue exchange in order to allow all European partners a cost-effective second look histopathology review at the e- Neuropathology Reference Center for Epilepsy Surgery (currently based in Erlangen, Germany, and equipped with a histopathology wet-lab and automated embedding and staining apparatus). As a gold standard, the contemporary approach is postal shipping as summarized below (see technical annex I-III). In order to reach out further and combine existing expertise across European countries as a collaborative e-Neuropathology Reference center approach, a web-based virtual microscopy reading and teaching platform should be developed. We investigated existing technical solutions (commercial and open source) for whole slide imaging and cross- platform virtual microscopy viewer (see Annex IV). Technical solutions for big data storage, data safety and linkage to the EpiCare database need further clarification and negotiation with EU representatives, as implementation and financial support is mandatory to develop such innovative European neuro-/pathology reference center network. Results Technical Annex I: SOP for sending native surgical tissue samples in formalin • Native surgical brain samples must be shipped in shock-protected jars pre-filled with 10% formalin. All material (available for various tissue volumes) can be requested from the Department of Neuropathology in Erlangen, Germany (for more information, please see xxx.xxxxxxxxxxxxxxx.xx-xxxxxxxx.xx). The jar should be labeled with an encoded Xxx-ID. Clinical history and other disease-relevant patient information should be send by separat postmail or electronically (web-based health information exchange platform to be provided by EU). • Upon arrival, the reference center will allot a new Xxx-ID for safety double encoding. The formalin-fixed surgical specimen will be processed according to international recommendations for the neuropathologicxal work-up of epilepsy surgery brain samples (see D6.1), including paraffin-embedding, 4µm thin sectioning followed by a predefined protocol of routine and immunohistochemical stainings to scientifically validate diagnosis (Blümcke et al. 2017). • A comprehensive histopathology report will be prepared in English language and send by ...
Activities carried out and results. The structure of the clinical database reported in the deliverable D 15.1, has been set up through discussions in the context of Steering Committee monthly TC and dedicated face-to face meetings. Prof Lieven Lagae, WP I leader, has significantly contributed to the development of the database. As first step, differences between registries and databases have been pointed out. Secondly, the Epi25K database (xxxx://xxx.xxxx.xxx/ ) has been chosen as a model to build the EpiCARE database, and has been adapted to more general clinical purposes and simplified to make it particularly suitable to transfer already stored data and quickly collect new data even with limited resources available. In order to feed the data in reasonably quick way, the database has been simplified and a modular structure has been used. An agreement has been reached concerning the minimum dataset (i.e. demographics, etiology and syndromic classification of epilepsy, comorbidities and treatment) during a dedicated Steering committee meeting (3rd December 2017). This scheme has been circulated to the Steering committee members for further amendments in December 2017. Finally, a clinical database fulfilling D 15.1 requirements has been set up (see D15.1 ANNEX 1). As shown in the D15.1 ANNEX 1, this database contains core (clinical) data (limited number of relevant data fields: demographics, age at epilepsy diagnosis, etiology of epilepsy, type of epilepsy syndrome, presence of associated intellectual disability, current medical and dietary treatment, previous surgical treatment) with drop down menus for specific items (i.e different types of epilepsy syndromes and current medical treatment) and does not need to be updated very frequently. It is modular, using the REDCap platform, e.g. the core data set (the core module) is common to all patients, but each center or patient group can add (locally) other data fields for its own use. The major achievement of this deliverable is the proposal of a research prone clinical database which will hopefully include all available patients through participation of HCPs and patient groups included in EpiCARE. Pending issues are as follows:
Activities carried out and results. The total length of this section depends on the specificity of the deliverable.
Activities carried out and results. The original Executive Briefing, in English, was written by Xxxx Xxxxx of UCL. Feedback on the summary was collected from all project partners, and incorporated in the final version of the Briefing. This version was circulated to project partners for translation in December, and the deliverable was assembled in January. The rest of this section of the deliverable presents the original English text of the Briefing, followed by the translations.
Activities carried out and results. The following are the training activities attended by each ESR since his/her re- cruitment.
Activities carried out and results. First contribution:
Activities carried out and results
