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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance BioBank
31 May 2010 Issue #3


Biobanking in the News

Biobanking will soon be available on a pan-European scale. The Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) will begin its transition from the planning phase to infrastructure implementation. BBMRI attempts to provide access to a Europe-wide collection of biomedical samples and data and is one of several research infrastructures of pan-European interest.

Click here to read the article.

ISBER Meeting Update

The International Society for Biological and Environmental Repositories (ISBER) held its 2010 Annual Meeting, on May 11-15. This meeting brought together a diverse set of stakeholders in biobanking, including biorepository operators, scientists, consultants, and vendors. The meeting covered areas such as connecting biorepositories, quality assurance, quality control, and harmonization of existing biorepositories. There was also time for interaction and discussion of current issues in biobanking. This year, the advocacy community had a voice, as Genetic Alliance presented a poster on survey results of advocacy-initiated biobanks and registries. We also presented a workshop on Expanding the Role of the Consumer in Biobanking.

Reporting Patterns for Data and Sample Access

A discussion on "Closing the Loop: Should Repositories Ask Researchers to Return Their Experimental Results?" was held at the ISBER meeting. At a minimum, most biorepositories require investigators to acknowledge the biorepository in any posters or publications. Some biorepositories conduct a yearly survey of those who have requested samples, while others have a medical writer or curator contact sample recipients to update their publication information. A few require co-authorship for sample access. Most biorepositories require that researchers provide a report of their experimental results, and often it is a copy of the publication. Some require return of information on sample quality and the types of experiments conducted. Very few require return of raw data due to technology limitations, including lack of space for very large data files and compatibility issues.

Genetic Alliance Annual Conference

Genetic Alliance presents the 2010 Annual Conference, Advancing Novel Partnerships, July 15-18 at the Bethesda North Marriott Hotel and Conference Center in metro Washington, DC. Join us for workshops on a variety of topics, including health IT, public health, genetics, community engagement, and partnerships. We will also have open space sessions to revisit principles from the leadership daylong symposium or explore the more free-form "Open Innovation" sessions.

Click here for more information.

Genetic Alliance Research Symposium

Join Genetic Alliance for a unique, daylong research symposium on July 16 that will explore novel methods of collaboration. Building Partnerships: How I will Change will give participants the open space and time to examine novel partnerships and craft solutions that result from such partnerships: increasing the shared commons, infrastructure and resources to accelerate all aspects of the research continuum.


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

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