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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance BioBank
29 October 2010 Issue #8


Biobanking in the News

The Institute of Medicine released the report, Rare Diseases and Orphan Products: Accelerating Research and Development, which calls for an integrated national strategy to promote rare disease research and product development. The report calls for 7 key strategic elements that incorporate collaboration, private public partnerships, appropriate incentives for innovation, and organizational expertise in rare diseases. Of special interest is strategy #4, calling for “Creative strategies for sharing research resources and infrastructure to make good and efficient use of scarce funding, exper tise, data, biological specimens, and partici­pation in research by people with rare con ditions.”

Read the summary or a blog post on the report.

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.

Award and Abstract Nominations

Genetic Alliance is now accepting Abstracts and Award Nominations for the 2011 Genetic Alliance Annual Conference,25 Years of Innovation!

The 2011 Annual Conference will take place June 24-25, 2011 at the Bethesda North Marriott Hotel and Conference Center. If you have an idea for a session, submit it now!

Do you know a healthcare provider who really listens? A skilled reporter? A group that brings new meaning to the term “novel partnership?” Nominate them now for Art of Listening, Art of Reporting, and Art of Novel Partnership Awards.

Submit nominations and abstracts by November 10, 2010.

P3G Observatory Resource

The P3G Observatory is a central Internet repository of scientific information and tools aimed at facilitating the development, realization and harmonization of research projects, including biobanks. A variety of tools are available, including tools for sample collection and processing, data collection and processing, and ethics, governance and public engagement. A very useful feature is the comparison of standardized data collection instruments in the repository of reference questionnaires.


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

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