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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance BioBank
28 January 2011 Issue #11


Biobanking in the News

Cancer specialists are often aware of the impact of biospecimen collection on biomedical research, however the public’s perception of biobanking is less clear. In an effort to engage the community, Dr. Noel-Thomas and colleagues are conducting focus groups to better understand how ethnic minorities view biobanking. The hope is that by involving the community at the beginning of the project, there will be increased participation.

Read the article.

Weekly Tips

Genetic Alliance Registry and BioBank has created a new weekly tips series tailored for advocacy organizations interested in registries and biobanks. These tips are designed for advocacy organizations in all stages on the journey of creating and cultivating a registry or biobank. 

Sign up or view the archive.

Registry Boot Camp

Genetic Alliance is hosting a Registry Boot Camp on March 7, 2011, in New York. This interactive workshop will address best practices for working with advisors, questionnaire design, tools to assess registry vendors, a review of organizational operations and resources, strategies for good governance, and tips for recruitment and retention. Attendance is limited to 20 participants.

View the agenda and register.

Advocacy Partnership Program

Genetic Alliance is accepting applications for the Advocates Partnership Program at the ACMG Annual Clinical Genetics Meeting, March 16-20, 2011 in Vancouver, British Columbia, Canada. This program is an opportunity to foster collaborations between genetics professionals and the advocacy community. The application deadline is Friday, February 4, 2011.

Biobanking Revitalized with Powerful IT Advances

IQPC’s 4th Biobanking Conference, January 25-26, 2011, addressed the major challenges faced by both start-up and established biorepositories. Experts from leading biorepositories described how they are handling the vast amounts of data in the modern biobanking movement, and concerns surrounding ethics and informed consent were discussed. Genetic Alliance BioBank Director, Liz Horn, gave a presentation on developing research initiatives and customizing solutions.

Read the news coverage of the conference.


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

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