Repositories are for institutions with a high volume of biomedical research activities and sample collections. With proper consent, data and biological materials can be banked for prospective research. Tissue and blood samples that are routinely discarded after diagnostic and pathological testing can also be retained for study.
Institutions with electronic medical record systems can update de-identified data and may also link that to corresponding specimens in the repository.
Research Repository Standard Operating Procedure (SOP) – Please use this protocol if you are developing a repository.
Research Repository Policies
- USC Policy for Biorepositories
- Research Repositories, Databases and the HIPAA Privacy Rule
- NIH Genomic Data Sharing Policy
- Coded Specimens Policy (OHRP)
Research Repository Consent and Management
- FAQs on Informed Consent for Use of Biospecimens and Data | HHS SACHRP | April 2018
- Informed Consent Templates for Genomic Research | NIH
- Biospecimen Best Practices | NCI
Research Repositories
- NIH Genomic Data Repository | dbGaP
- Biospecimen Research Database | NCI
- Mayo Clinic
- Northwestern | NuGene Project
- National Heart Lung and Blood Institute| BioLINCC
- Mass General Brigham Biobank
- Global Biobank Directory, Tissue Banks and Biorepositories
