Biobanks play a crucial role in healthcare by archiving a range of biospecimens for research. However, in developing the National Cancer Institute’s (NCI) Cancer Genome Atlas initiative in 2005, NCI researchers were severely limited by the inability to obtain high-quality biosamples from biobanks. Lack of standardization of protocols for collecting and storing specimens, limited quality control of specimens’ storage, outdated methods of bio-preservation, and lack of sufficient funding and interest are all barriers to biobank evolution. NCI has created guidelines for the biobanking industry to improve sample quality.
Meet Sharon Terry, President/CEO of Genetic Alliance, who established the PXE (pseudoxanthoma elasticum) International BioBank. Here Sharon discusses the important role for advocates in biobanking, how she became involved in the field, the challenges she faced, and how advocates working together can make a difference.
Join us at the 2010 Genetic Alliance Annual Conference for GABB Ambassadors, an inaugural registry and biobank mentoring program. GABB Ambassadors provides a forum to connect organizations that have established registries or biobanks with new organizations that may be interested in creating these resources. This will be an opportunity to strengthen the community as a whole and provide additional resources for advocates exploring registries and biorepositories. Interested participants will meet during breakfast on Saturday morning, July 17, to share common interests, challenges and solutions. Additional activities will be planned throughout the year.
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, D.C. Join us for workshops on a variety of topics, including health IT, public health, genetics, community engagement, and partnerships.
As part of the 2010 Annual Conference, a daylong research symposium entitled Building Partnerships: How I will change will be held on Friday, July 16. The day will ask each participant to "reflect on how we might need to change what we ourselves are thinking and doing." Participants will be given open space and time to examine a variety of partnerships and engage others to craft solutions that result from such partnerships. Join us in transforming biomedical research!
Edited by Liz Horn, Ley Lacbawan, and Sharon Terry.