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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance BioBank
30 November 2010 Issue #9


Biobanking in the News

Impatient with the slow pace of clinical research, families of individuals suffering from untreatable diseases are taking matters into their own hands—with some success. In the November issue of Nature Biotechnology, Virginia Hughes reports on patient advocates driving research and drug development, and select biobanks launched by patient groups worldwide.

Read the article.

Common Mistakes in Labeling Samples

While labeling may seem like a simple task, labels are an integral part of the success of a biobank. Labels hold critical data and information, and without them, samples become unreliable and even irrelevant. This article discusses five common mistakes in labeling samples.

Read the article, Five Common Mistakes in Lab Labeling.

Translational Research Enterprise Salons

Disease advocacy organizations are at the center of initiating, firing up, accelerating, and retooling research. It is time to have conversations about developing better systems and collaborative partnerships, keeping what works, and creating new paradigms where they are needed. Join Genetic Alliance in person or online in one or both upcoming salons: Salon 1: December 13, 2010 3:00 – 5:00 PM EST Salon 2: December 22, 2010 12:00 – 2:00 PM EST. All are welcome.

Learn more about this opportunity and our dynamic salon format.

Informed Consent Survey

Genetic Alliance is conducting a short survey about perceptions surrounding informed consent in the disease advocacy community. Please complete the short survey to share your experiences with research and informed consent. The results of this survey will be used to inform our services and training opportunities.

Take our survey.

Biobank Governance Webinar Archived

Registries and biobanks are important tools to advance research, and stewardship and governance are vital components of these research endeavors, as donors are requiring more accountability, transparency, and information about the research studies they participate in. Kelly Edwards, Ph.D., and Susan Brown Trinidad, MA, both from University of Washington, and Liz Horn, Ph.D., from Genetic Alliance presented a webinar on biobank stewardship and governance on October 27, 2011.

View the webinar.

View the good governance checklist.


Edited by Liz Horn, Ley Lacbawan, and Sharon Terry.

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