About Biospecimen & Data Repositories
Repositories are an increasingly popular resources 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.
Updated FAQs on Informed Consent for Use of Biospecimens and Data | April 2018
USC has a Policy for Biorepositories
USC has not yet established a university-wide biorepository.
Data Exploration and Warehousing to Advance Resarch Solutions (DEWARS) is a data repository is being established as a resource of electronic health records for study planning (feasibility assessments, power analyses).
Establishing Biospecimen or Data Repositories
Biorepository Models Universal Prototypes
Issues to Consider (HHS)
Research Repositories, Databases and the HIPAA Privacy Rule
NIH Genomic Data Sharing Policy
Data-repository & De-identification Open-source Software
Biospecimen Best Practices (NCI)
What Human Specimen Repositories Need to Tell Their IRBs (NCI)
Model Informed Consent Documents (NCI/NAPBC)
Consent Form Comparison Table
Informed Consent Templates for Genomic Research (NIH)
Coded Specimens Policy (OHRP)
Biospecimen Research Database (NCI)
BioLINCC (National Heart Lung and Blood Institute)
Directory of North American Biospecimen Banks
dbGaP NIH Genomic Data Repository
Kaiser/ UCSF Research Program on Genes, Environment, and Health
NuGene Project (Northwestern)
Vanderbilt Biorepository Consortium
Veteran’s Affairs GenISIS
Biorepository Legal Concerns
Legal and Ethical Issues Related to Human Specimens and Associated Data (NIH)
Research Repositories, Databases and the HIPAA Privacy Rule (NIH)
Genetic Information Nondiscrimination Act of 2008 (GINA)