Biospecimen & Data Repositories

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.

USC has a Policy for Biorepositories (Aug 17, 2012)
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).
DEWARS FAQ

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

Biorepository Ethics

Bioethics for Human Tissues (NIH) [BROKEN LINK]
Biospecimen Best Practices (NCI)
What Human Specimen Repositories Need to Tell Their IRBs (NCI)
Returning Individual Results and Incidental Findings (UMinn) [BROKEN LINK]
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)

Leading Biorepositories

BioLINCC (National Heart Lung and Blood Institute)
Directory of North American Biospecimen Banks
dbGaP NIH Genomic Data Repository
HIV / AIDS Specimen Repository NIAID [BROKEN LINK]
Kaiser/ UCSF Research Program on Genes, Environment, and Health
Mayo Clinic
Harvard Biorepositories
University of Michigan Biorepository [BROKEN LINK]
NuGene Project (Northwestern)
BioVu (Vanderbilt)
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)

International Biorepositories

Biobank Directory by Country
Britain
Estonia
Finland
Iceland [BROKEN LINK]
Luxembourg
Norway
Singapore
Sweden