Advocacy organizations are establishing and managing registries and biobanks are playing a vital role in research. Genetic Alliance has an advocacy-initiated and advocacy-run registry and biobank (Genetic Alliance Registry & BioBank
). This is a distinct program from the family health history mentioned above.
S.F. Terry, E.J. Horn, J. Scott, P.F. Terry. Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution. Personalized Medicine, 8(2): 207-13, March 2011.
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