title: Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research.
abstract: Biobanks are increasingly powerful tools used in translational research, and disease advocacy organizations (DAOs) are making their presence known as research drivers and partners. We examined DAO approaches to biobanking to inform how the enterprise of biobanking can grow and become even more impactful in human health. In this commentary, we outline overarching approaches from successful DAO biobanks. These lessons learned suggest principles that can create a more participant-centric approach and illustrate the key roles DAOs can play as partners in research initiatives. DAO approaches to biobanking for translational research include the following: be outcome driven; forge alliances that are unexpected-build bridges to enhance translation; come ready for success; be nimble, flexible, and adaptable; and remember that people matter. Each of these principles led to particular practices that have increased the translational impact of biobank collections. The research practices discussed can inform partnerships in all sectors going forward.
authors.affiliation: 1 Department of Bioethics and Humanities, University of Washington School of Medicine , Seattle, Washington.
authors.forename: Kelly A
authors.initials: KA
authors.lastname: Edwards
authors.affiliation: 2 Genetic Alliance, Inc. , Washington, District of Columbia.|3 PXE International, Washington, District of Columbia.
authors.forename: Sharon F
authors.initials: SF
authors.lastname: Terry
authors.affiliation: 4 University of Washington , Seattle, Washington.
authors.forename: Dana
authors.initials: D
authors.lastname: Gold
authors.affiliation: 5 LHC BioSolutions, Portland, Oregon.
authors.forename: Elizabeth J
authors.initials: EJ
authors.lastname: Horn
authors.affiliation: 6 Pachyonychia Congenita Project, Salt Lake City, Utah.
authors.forename: Mary
authors.initials: M
authors.lastname: Schwartz
authors.affiliation: 7 Strategic Change Consultant, Davis, California.
authors.forename: Molly
authors.initials: M
authors.lastname: Stuart
authors.affiliation: 8 CFIDS Association of America, Charlotte, North Carolina.
authors.forename: Suzanne D
authors.initials: SD
authors.lastname: Vernon
mesh_terms: D018070:Biological Specimen Banks / Q000706:statistics & numerical data* / Q000639:trends; D006801:Humans; D013048:Specimen Handling; D057170:Translational Research, Biomedical / Q000458:organization & administration*