Genetic Alliance Registry and BioBank offers a variety of training tools to help advocacy organizations create and develop successful registries and biobanks.
RELEVANT INFORMATION FOR TRAINING
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.
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.
Marketing Your Biobank: October 11, 2012; Presenters: Liz Horn, Marianna Bledsoe, Kathy Sexton
Registry and BioBank Question and Answer Session: September 1, 2010; Presenters: James O’Leary, Liz Horn, Suzanne Vernon
Making Your Organization’s Registry and/or Biobank a Reality: August 11, 2010; Presenters: Kim McCleary, Megan O’Boyle, Liz Horn
Biobank Governance: October 27, 2010; Presenters: Kelly Edwards, Susan Brown Trinidad, Liz Horn
Genetic Alliance Registry and BioBank: A Virtual Tour of Registry Solutions to Accelerate Research: February 3, 2010; Presenters: Liz Horn
Genetic Alliance Registry and BioBank: May 20, 2009; Presenters: Liz Horn
This listserv has been created to discuss issues surrounding registries and biorepositories. Please email email@example.com to join the listserv.
These worksheets and checklists have been developed to assist organizations considering or planning a registry or biobank.
HOW GARB CAN HELP
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.
OUR SUPPORT TEAM
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.