Landscape analysis of registries and biobanks: a tool for disease advocacy organizations to enhance translational research systems.
Disease advocacy organizations play an increased role in the development and management of registries and biorepositories. Genetic Alliance developed criteria to assist organizations in selecting vendors and conducted a technical assessment survey of potential vendors. More than half offered customizable solutions, and biorepositories surveyed offered a variety of genomic services. Nearly three-quarters collect deidentified data, and few use controlled vocabulary, limiting the ability to recontact participants and share data. While this does not represent the complete registry and biorepository landscape, it is a starting point to assist organizations in assessing appropriate solutions.
Genetic Alliance , Washington, DC.
Elizabeth J
EJ
Horn
Jim F
JF
Bialick
Sharon F
SF
Terry