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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
December 30, 2011 Issue #22


Citizen Scientists use Crowdsourcing

A recent article in The Wall Street Journal examined the emerging role of citizen scientists in research. Citizen scientists are taking on a variety of projects to advance research, many in collaboration with scientists. One such project created by Genetic Alliance and Sage Bionetworks, That’s My Data!, launched earlier this year. This partnership looks to broker relationships between participants and researchers; ensuring open access to results for participants in exchange for samples. Many of these projects utilize crowdsourcing, and the Boston Globe highlights how citizen scientists are using crowdsourcing to fold proteins, decipher hieroglyphics, and categorize galaxies.

Million Veteran Program

The Veterans Affairs (VA) Office of Research and Development has launched the Million Veteran Program (MVP), an important partnership between VA and veterans. The goal of the MVP is to better understand how genes affect health and illness in order to improve health care for veterans. The MVP takes advantage of the electronic medical record system that has been in place in VA hospitals for the past two decades. These records are coupled with a donated blood sample from veterans who volunteer for the study. All information is deidentified, and veterans agree to be recontacted. This important research initiative may be the largest research database in the world, and has the potential to unlock information about genes and environment.

Learn more about MVP.

Solutions for Barriers to Collaboration

In a recent The Experts Speak opinion piece in the journal Biopreservation and Biobanking, What Are the Main Roadblocks to Transnational Biobank Collaboration, and How Can We Overcome Them, several experts identified challenges associated with transnational biobank collaboration and offered solutions. While each expert had a slightly different perspective, common themes included privacy law challenges, inconsistent quality of samples, and inconsistent utilization of standard operating procedures (SOPs). To combat these difficulties, many experts proposed more homogeneity in the construction of biobanks and following international standards and practices. The Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) Catalogue of European Biobanks was highlighted as a resource for transnational collaborations.

52 Weeks – 52 Biobanking Tips

For the past year, Genetic Alliance Registry & BioBank has provided a weekly tip about registries and biobanks. This tip series is designed for individuals and advocacy organizations in all stages on the journey of creating and cultivating a registry or biobank. Sign up for biobank weekly tips in 2012, view the biobank weekly tip archive, or follow @GaBioBank on Twitter.

IRB Webinar Archived

Demystifying the IRB webinar archive is now available on YouTube. On December 7, Marianna Bledsoe, senior program manager, Department of Veterans Affairs, Liz Horn, director, Genetic Alliance Registry & BioBank, and Susan Brown Trinidad, research scientist, University of Washington, provided practical strategies for working in partnership with your IRB, such as engaging your IRB early and often. The panelists also reviewed how to write an informative biorepository research protocol and provided an update on relevant policy developments in the U.S.

Upcoming Webinars

The NIH Biospecimens Interest Group will meet on January 26 at 1:00 PM EST in the Lipsett Amphitheater, Building 10 (NIH Clinical Center). This session will focus on Acquisition of Normal Tissues for the GTEx Program. Presentations include: 1) The Genotype-Tissue Expression (GTEx) Program: Scientific Goals and Objectives, and 2) caHUB Support of GTEx: Overcoming Scientific and Operational Challenges to Deliver High-Quality Tissues. The presentation will be broadcast live.


Edited by Liz Horn and Sharon Terry.

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