Genetic Alliance Gives Disease a Run for its Money with its BioBank
Disease-Specific Organizations Invited to Apply for $20,000 BioBank Grant

WASHINGTON – March 11, 2010 – Genetic Alliance announced today a new grant it will offer to a disease-specific organization to fund its entry into the Genetic Alliance BioBank. The BioBank is an advocacy-owned and controlled repository for biological samples and clinical data. Genetic Alliance staff conceived of the grant to help a disease-specific organization further its understanding and treatment of that disease using the resources available through the BioBank.

“First, I am immensely proud of the staff’s decision. They could have used those funds for anything at all, but the decision to donate it to the research community is a generous and noble one,” said Sharon Terry, president and chief executive officer of Genetic Alliance and president of the Genetic Alliance BioBank. “The establishment of well-characterized cohorts to stand ready for clinical trials is essential for all diseases. We are working with many partners to transform the paradigm for drug development. Disease-specific organizations are critical trust communities and excellent conveners of these cohorts. Giving them tools to create registries and biorepositories is a tremendous catalyst to treatment development.”

All nonprofit, disease-specific organizations are eligible to apply for the $20,000 grant. Multiple organizations focused on a single condition, gene, or disease pathway may also apply together. To qualify, applicants must do the following: 1) complete an application; 2) demonstrate fiscal capacity to maintain the registry once initiated; 3) attend at least one Genetic Alliance-hosted Registry and Repository Boot Camp, either in person or virtually; 4) create or update a Disease InfoSearch listing; and 5) upload resources into the Resource Repository to contribute to the commons. Eligible organizations must submit applications by May 1, 2010. Genetic Alliance will announce the grant awardee on July 17 during the 2010 Genetic Alliance Annual Conference, Advancing Novel Partnerships. For more information and to fill out an application, visit http://www.geneticalliance.org/biobank.

“We are very excited about the tools and resource available to us as a BioBank member organization. What a wonderful opportunity that Genetic Alliance staff are providing to other organizations,” stated Dr. Suzanne Vernon, Scientific Director of CFIDS Association of America.

In addition to $20,000, the BioBank Grant includes training and mentoring by experts in biobanking, participant recruitment tools, and access to all the technology and additional benefits of membership.

“Genetic Alliance believes that collaboration more efficiently leads to positive outcomes, and the BioBank offers a tangible application of these tenets,” said Jim Bialick, Health Information Systems Coordinator. “We unanimously decided to use a large part of our staff discretionary fund to seize this golden opportunity to partner with the community we are passionate about, in a novel way.”

Genetic Alliance BioBank is a centralized, advocacy-owned, biological sample repository and registry that enables translational genomic research. The BioBank provides registry and repository solutions and shared infrastructure for disease-specific organizations to pursue sophisticated, new collaborations with academia and industry to accelerate research, develop new diagnostics and therapeutics, and better understand and treat disease. The BioBank is a cooperative and currently has six member organizations. It offers web-based questionnaire tools in a user-friendly interface to allow individuals or their providers to input clinical information. In 2009 the BioBank added new Genesis Enterprise System® Software data mining software to the suite of standards-based registry and repository tools (TRIMS^TM) from Gene Logic, an Ocimum Biosolutions Company.

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About Genetic Alliance
Genetic Alliance transforms health through genetics, promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance brings together diverse stakeholders that create novel partnerships in advocacy; integrates individual, family, and community perspectives to improve health systems; and revolutionizes access to information to enable translation of research into services and individualized decision making. For more information about Genetic Alliance, visit http://www.geneticalliance.org.

About Gene Logic
The Genetic Alliance BioBank contracts with Gene Logic, a Gaithersburg, MD-based integrated genomics company providing comprehensive genomic reference databases, life science lab information management solutions, GLP-compliant genomic data generation services and essential research consumables. Gene Logic provides biorepository services and licenses the TRIMS^TM registry and Genesis Enterprise System® Software data mining software to Genetic Alliance BioBank.