Sharing Data and Specimens
When research findings are shared broadly with investigators in the research community, it leads to discoveries that deepen the understanding of disease and improve treatment options for patients. Equitable data sharing balances data accessibility with the rights of the patients who allow their data to be used and reused to catalyze discovery.
To further advance and accelerate research to benefit the public health, data developed in the NIH Intramural Research Program (IRP) (NIH-owned or jointly-owned) should be collected in a manner that permits and promotes the broadest sharing possible. NIH IRP investigators are expected to broadly share data for secondary research purposes consistent with applicable laws, regulations, and policies. Data sharing may be limited, in certain cases, by agreements with outside collaborators, e.g., Cooperative Research and Development Agreements (CRADAs), Clinical Trial Agreements, or other agreements.
Guidelines Regarding Data Sharing and Specimens
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FAQs
Additional Resources
- Forms
- Policy
- Presentations
- OHSRP Education Series Presentation: When IRB Approval is Necessary and How to Complete the New Investigator Attestation for Tech Transfer Agreements (3/18/19) Slides and Videocast
- Best Practices for the Approval and Conduct of Secondary Research, including Repositories (7/09/19) Slides and Videocast
- Using and Sharing Existing Specimens and Data for Secondary Research: Expectations for Consent and IRB Approval NIDA Clinical Rounds (10/07/21) Slides
- The NIH Genomic Data Sharing Policy: Applicability to the Intramural Research Program (12/01/21) Slides and Videocast
- Using or Sharing Data or Biospecimens for Research: When is IRB Approval Needed? (OHSRP, 4/13/20)