Introduction and Statement of Policy. The National Institutes of Health (NIH) has established NIH-designated data repositories (e.g., database of Genotypes and Phenotypes (dbGaP), Sequence Read Archive (SRA), NIH Established Trusted Partnerships) for securely storing and sharing controlled-access human data submitted to NIH under the NIH Genomic Data Sharing (GDS)
Introduction and Statement of Policy. The National Institutes of Health (NIH) has established NIH-designated data repositories (e.g., database of Genotypes and Phenotypes (dbGaP), Sequence Read Archive (SRA), NIH Established Trusted Partnerships) for securely storing and sharing controlled-access human data submitted to NIH under the NIH Genomic Data Sharing (GDS) Policy. Because the volume of human genomic and phenotypic data contained in these repositories is substantial and, in some instances, potentially sensitive (e.g., data related to the presence or risk of developing particular diseases or conditions and information regarding family relationships or ancestry), data must be shared in a manner consistent with the research participants’ informed consent, and the confidentiality of the data and the privacy of participants must be protected. Access to human genomic data will be provided to research investigators who, along with their institutions, have certified their agreement with the expectations and terms of access detailed below. It is the intent of NIH and the NCI that approved users of controlled-access datasets obtained through this DAR recognize any restrictions on data use established by the submitting institution through the Institutional Certification and stated on the dbGaP study page. Definitions of terminology used in this document are found in the Appendix. The parties to this agreement include: the Principal Investigator (PI) requesting access to the genomic study dataset (an “Approved User”), the PI’s home institution as represented by the Institutional Signing Official designated through the eRA Commons system (the “Requester”), and the relevant NIH Institute or Center (IC). The effective date of this agreement shall be the Project Approval Date, as specified on the Data Access Committee (DAC) approval notification.
Introduction and Statement of Policy. The National Institutes of Health (NIH) has established the Rapid Acceleration of Diagnostics (RADxSM) Data Hub for securely storing and sharing human data submitted to NIH as part of the RADxSM program. Because the volume of human data maintained in this data repository is substantial and potentially sensitive (e.g., data related to the presence or risk of developing particular diseases or conditions and information regarding family relationships or ancestry), data must be shared in a manner consistent with the research participants’ informed consent, and the confidentiality of the data and the privacy of participants must be protected. Access to RADxSM data will be provided to research investigators who, along with their institutions, have certified their agreement with the expectations and terms of access detailed below. NIH expects that, through Data Access Request (DAR) process, approved users of open and controlled-access datasets recognize any restrictions on data use established by the Submitting Institutions through the Institutional Certification. Definitions of the underlined terminology in this document are found in section 13. The parties to this Agreement include: the Principal Investigator (PI) requesting access to the genomic study dataset (an “Approved User”), the PI’s home institution (the “Requester”) as represented by the Institutional Signing Official designated through the eRA Commons system, and the NIH. The effective date of this Agreement shall be the DAR Approval Date, as specified in the notification of approval of the Data Access Committee (DAC).
Introduction and Statement of Policy. The Women’s Interagency HIV Study (WIHS), funded by the National Institutes of Health (NIH), has an established central host genomic data repository called the WIHS Genomics Database for securely storing and sharing human host genomic data submitted to the WIHS. Implicit in the establishment of the WIHS Genomics Database is that scientific progress in genomic research will be greatly enhanced if the data are readily available to all approved scientific investigators and shared in a manner consistent with the research participants’ informed consent. Access to human genomic data will be provided to research investigators who, along with their WIHS Contact (e.g., site PI), have certified their agreement with the expectations and terms of access detailed below. It is the intent of NIH and the WIHS that approved users of the WIHS Genomics Database datasets recognize any restrictions on data use established by the WIHS stated on the WIHS Concept Sheet, the WIHS Genomic Data Code of Conduct, and the WIHS Genomic Data Use Contract. Definitions of terminology used in this document are found in Appendix 1. This Data Use Agreement (the “Agreement”) is by and between the WIHS Principal Investigators [Drs. Xxxx Xxxxxxxx and Xxxx Xxxxxxx (Xxxxx University); and Dr. Xxxx Xxxxx (Georgetown University); and Drs. Xxxxxxx Xxxxx and Xxxxxxxxx Xxxxx (Xxxxx Xxxxxxx University); and Xx. Xxxxxxx Xxxxxxx (Montefiore Medical Center); and Drs. Xxxxxx Xxxxx and Xxxxxx Xxxxxx (Chicago WIHS Consortium : Cook County Hospital, University of Illinois at Chicago, Rush-Presbyterian-St. Luke's Medical Center, and Northwestern Memorial Hospital); and Drs. Xxxxxxx Xxxx and Xxxxxx Xxxxxxx Xxxxx (The University of Alabama at Birmingham); and Drs. Xxxx Xxxxxxxxxx, Xxxxxxx Xxxx and Xxxxxxx Xxxxxxxxx (The University of California at San Francisco); and Drs. Xxxxxxxx Xxxxxx and Xxxx Xxxxxx (The University of Miami); and Xx. Xxxxxxx Xxxxxx- Parker (The University of Mississippi at Xxxxxxx); and Xx. Xxx Xxxxxxx (The University of North Carolina at Chapel Hill); and Drs. Xxxxxx Xxxxxxx and Xxxxxxx Xxxxxxxxx (The State University of New York at Brooklyn), (hereinafter referred to individually as “WIHS CONSORTIUM”) and [INSERT INVESTIGATOR NAME] (“Approved User”). This agreement (“Agreement”) establishes the terms and conditions under which the User will obtain and use certain data (“Genomics Dataset”) from the Women’s Interagency HIV Study (WIHS) maintained by the WIHS Consortium. The effective date of ...
Introduction and Statement of Policy. The National Institutes of Health (NIH) has developed central data repositories to archive and distribute the results of studies provided by Contributing Investigators examining the relationship between genomic data (e.g., genotype, sequence, or epigenetic information) and phenotype. Such studies include genome-wide association studies, medical sequencing, and molecular diagnostic assays. Implicit in the establishment of the NIH data repositories, for example the database of Genotypes and Phenotypes (dbGaP), is the view that scientific progress in this area will be greatly enhanced if the data produced by these studies are readily available to all investigators in the research community. Dataset access will be provided to research investigators who, along with their institutions, have certified their agreement with the expectations and terms of access detailed below. It is the intent of the NIH and National Institute on Aging (NIA) that Approved Users of NIH-provided datasets recognize any restrictions on data use delineated within the original informed consent agreements of contributing studies, as identified by the submitting institutions and stated on database websites. Definitions of terminology used in this document are found in the Appendix. The parties to this agreement include: the Principal Investigator (PI) requesting access to the genomic study dataset (“the Approved User”), his/her home institution as represented by the Institutional Signing Official designated through the eRA Commons system (“the Requester”), and the NIA, NIH. The effective date of this agreement shall be the Project Approval Date, as specified on the Data Access Committee approval notification.
Introduction and Statement of Policy. The National Institutes of Health (NIH) has established two central data repositories for The Cancer Genome Atlas (TCGA): the Cancer Genomics Hub (CGHub) stores lower level xxxxxxxx xxxx and the TCGA Data Portal stores all other data types and higher-level analyses of the xxxxxxxx xxxx. Systems implemented for the database of Genotypes and Phenotypes (dbGaP) also manage the application, approval and authentication processes for investigators wishing to access Closed Access TCGA data. The terms outlined in this Data Use Certification do not apply to Open Access data. Users should review dbGaP policies for securely storing and sharing human data submitted to NIH under the Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS), but users shall note that TCGA data are not GWAS data and have slightly different policies associated with them as outlined in this Data Use Certification. Implicit in the establishment of these data management systems is that scientific progress in genomic research will be greatly enhanced if the data are readily available to all scientific investigators and shared in a manner consistent with the human subjects protocols under which participant’s data and samples were donated to TCGA. Access to human genomic data will be provided to research investigators who, along with their institutions, have certified their agreement with the expectations and terms of access detailed below. It is the intent of NIH, National Cancer Institute (NCI-NIH), and the National Human Genome Institute (NHGRI-NIH) that approved users of TCGA datasets recognize restrictions on data use established by the submitting institution through the Institutional Certification and stated on TCGA’s Publication Guidelines page (xxxx://xxxxxxxxxxxx.xxx.xxx/publications/publicationguidelines). Definitions of terminology used in this document are found in the Appendix. The parties to this agreement include: the Principal Investigator (PI) requesting access to the genomic study dataset (the “Approved User”), his/her home institution as represented by the Institutional Signing Official designated through the eRA Commons system (the “Requester”), and the relevant NIH Institute or Center (IC). The effective date of this agreement shall be the Project Approval Date, as specified on the Data Access Committee (DAC) approval notification.
