NIH guidance on selecting a repository encourages researchers to use domain-specific, open-access data sharing repositories – whether funded by NIH or other choices – whenever possible.
Additional Considerations for Human Data
When working with human participant data, including de-identified human data, here are some additional characteristics to look for:
Fidelity to Consent: Uses documented procedures to restrict dataset access and use to those that are consistent with participant consent and changes in consent.
Restricted Use Compliant: Uses documented procedures to communicate and enforce data use restrictions, such as preventing reidentification or redistribution to unauthorized users.
Privacy: Implements and provides documentation of measures (for example, tiered access, credentialing of data users, security safeguards against potential breaches) to protect human subjects’ data from inappropriate access.
Plan for Breach: Has security measures that include a response plan for detected data breaches.
Download Control: Controls and audits access to and download of datasets (if download is permitted).
Violations: Has procedures for addressing violations of terms-of-use by users and data mismanagement by the repository.
Request Review: Makes use of an established and transparent process for reviewing data access requests.
NIH-supported domain-specific data repositories -- Submission is typically limited to data of a certain type or related to a certain discipline.
PubMed Central can store publication-related supplemental materials and datasets directly associated with publications. Datasets up to 2 gigabytes
Illinois Data Bank - if you are working with a UI faculty member
Guide to sharing NIH-funded research on figshare.com
Vivli - focus is on sharing individual participant-level data from completed clinical trials to serve the international research community
Re3Data - registry of data repositories
RedCAP and Github are not considered repositories
Effective Jan. 25, 2023, the Final NIH Policy for Data Management and Sharing (DMS Policy) requires all NIH-supported research that generates scientific data to include a Data Management and Sharing Plan, or “Plan” for short.