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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
25 March 2011 Issue #13


Happy Anniversary Registry and Biorepository Bulletin

This March, the Registry and Biorepository Bulletin celebrates its one-year anniversary. In the past year, we have highlighted relevant news stories, recent updates from the literature, scientific meetings, and training opportunities. Please complete this short survey to provide feedback and share your thoughts on the bulletin. Results will inform our planning for the upcoming year.

Biobanking and the Law

NPR explores the role of science and biobanking in the courtroom, and the tensions between wanting to quickly integrate a new technology while waiting to make sure it is properly validated. Using its repository of 1,000 different batches of anthrax bacteria, the FBI used a new genetic fingerprinting technique to match the anthrax found in labs with the spores found in the 2001 anthrax letter attacks. There is still uncertainty if each anthrax batch has a distinctive signature, and some worry that the letter samples might match other batches, making it difficult to identify a single source.

Read the article.

Genetic Alliance Registry and Biobank Manuscript

A special report, Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution was published in the March issue of Personalized Medicine. Genetic Alliance Registry and BioBank (GARB) is a cooperative venture that provides shared infrastructure and customized solutions for disease advocacy organizations to lead sophisticated research initiatives. The manuscript describes the impetus behind GARB, its formation, and important lessons learned along the journey.

New Solutions for Sample Labeling

The Nice University Hospital is using Radio Frequency Identification (RFID) to provide optimal traceability and confidentiality of specimens stored in a biobank. The RFID chip is used in other healthcare applications, and makes it possible to store and read large quantities of data simply, anonymously, and reliably. This technology will help improve patient care by recording transport times, providing better quality of specimens, and ensuring the confidentiality of data.  

Read the article.

Genetic Alliance’s 25th Anniversary

At the Genetic Alliance 25th Anniversary Annual Conference, June 23-26, 2011, advocates and community leaders, health and industry professionals, policymakers, academicians, and more will join together to engage in cutting-edge discourse, brainstorming, workshops, and networking. A specialized biobanking track will focus on issues of organization, trust, and governance and will include the Genetic Alliance Registry and Biobank Boot Camp. Boot Camp is limited to 25 participants, so sign up today.

Stay Connected to Genetic Alliance Registry and BioBank

Follow Genetic Alliance Registry and BioBank (@GABioBank) on twitter or read our weekly tips series. These resources are designed for individuals and advocacy organizations in all stages on the journey of creating and cultivating a registry or biobank.  

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Edited by Liz Horn, Catherine Dokurno, and Sharon Terry.

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