About Genetic Alliance Biobank

Example of BiobankTRAINING CENTER

Genetic Alliance Registry and BioBank offers a variety of training tools to help advocacy organizations create and develop successful registries and biobanks.


BioBank Toolbox

The GAB Toolbox is designed to serve as a map of the tools and resources created by GARB. With the help of the Toolbox, we hope to guide you to all of our different resources for registries or biobanks.

Weekly Tips

Each week, Genetic Alliance Registry and BioBank creates a tip tailored for advocacy organizations interested in registries and biobanks. Learn about best practices, effectives strategies, and useful tidbits to make your registry and biobank better!


This teleconference series offers information and discussion framework on topics relating to Genetic Alliance Registry and BioBank.

Discussion Listserv

This listserv has been created to discuss issues surrounding registries and biorepositories. Please email biobank@geneticalliance.org to join the listserv.


These worksheets and checklists have been developed to assist organizations considering or planning a registry or biobank.


Genetic Information in Arm

The Genetic Alliance Registry and BioBank (GARB) is a unique model for biobanking because its structure empowers member organizations and participants to advance research they feel is important.  As opposed to traditional biobanks, GARB is built on a Co-op model.  This means that several disease advocacy organizations join together to share the financial responsibility for running a state-of-the-art tissue repository.  By sharing the financial burden, biobanking becomes affordable and accessible for all organizations, including smaller ones that may not have the needed funds to set up a biobank on their own.   

Though financial responsibilities are shared, control over donated samples is retained by member groups.  Unlike traditional biobanks where scientists, academics, and drug developers determine the direction of research, GARB empowers its member disease advocacy organizations (DAOs) to point the way to research that will benefit their specific communities.

If you want more information about GARB, visit our GARB FAQ page.


For many organizations, joining the medical research community is exciting, but can be challenging.  GARB, through its experienced staff and its connections through Genetic Alliance, can provide the necessary support and guidance. GARB’s biobanking system is flexible enough to accommodate all DAOs regardless of size, location, or organizational capacity. Online portals can be accessed anywhere, without extra hardware, to give member DAOs control from any place at any time.

GARB provides both registry and biorepository services.  Our registry allows members to collect crucial clinical data in order to better understand diseases and their longitudinal effects.  Clinical data are usually collected online in a self-report questionnaire completed by the affected individuals.

Our biorepository is a state-of-the-art facility that provides storage of DNA, cell lines, FTA cards, and other sample types.  In addition to simple storage, our biorepository also offers DNA extraction, cell line creation, and a whole host of other genomic services.  The biorepository services are essentially unlimited.


GARB has a experienced and capable team of professionals, lawyers, ethicists and policymakers to ensure the integrity of biobanking/registry process. The organization has an Institutional Review Board (IRB) and a Biotrust Ethics Team to support DAOs.


Chair: Susan Bankowski, MS, JD

Christine Carter, PhD, MPH

Kevin Fitzgerald, SJ, PhD

Jessica Hobart, MPH

Shirley L. Jones, PhD, RNC

BioTrust Ethics Team

Chair: Kelly Edwards, University of Washington

Nicholas Anderson, University of Washington

Greg Biggers, Genomera

Leila Jamal, Johns Hopkins University

Jane Kaye, Oxford University

Kieran O’Doherty, University of Guelph

Suzanne Vernon, CFIDS Association of America

David Winickoff, University of California at Berkeley