Biospecimen & Data Repositories

Repositories are a 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.

Biorepository Models


Biorepository Policies

USC Policy for Biorepositories

Research Repositories, Databases and the HIPAA Privacy Rule

NIH Genomic Data Sharing Policy

Coded Specimens Policy (OHRP)


Biorepository 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


Biorepositories

NIH Genomic Data Repository | dbGaP 

Biospecimen Research Database | NCI

Vanderbilt | BioVu

Mayo Clinic

Northwestern | NuGene Project

Vanderbilt Biorepository Consortium

Veteran’s Affairs Million Veteran Program

National Heart Lung and Blood Institute| BioLINCC

Kaiser Research Program on Genes, Environment, and Health

Partners HealthCare Biobank |Brigham and Women’s Hospital Massachusetts


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 


International Biorepositories

Britain

Estonia

Finland

Luxembourg

Norway

Singapore

Sweden