Advocacy Recruiting for Huntington’s Disease Clinical Trials

Recent clinical trials for Huntington's disease (HD) have been slowed by the inability to complete enrollment in a timely manner. We report a successful advocacy-based recruiting approach at Evergreen Neuroscience Institute, a new Huntington Study Group (HSG) investigative site that lacked an H...

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Detalles Bibliográficos
Autores principales: Goodman, LaVonne, Sia, Cherrie, Carnes, Roger, Vetter, Louise, Taubman, Fred, Venuto, Charles S., McGarry, Andrew, Kieburtz, Karl, Agarwal, Pinky
Formato: Texto
Lenguaje:English
Publicado: Public Library of Science 2011
Materias:
Huntington Disease
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3082401/
https://www.ncbi.nlm.nih.gov/pubmed/21532913
http://dx.doi.org/10.1371/currents.RRN1230
Descripción
Sumario:Recent clinical trials for Huntington's disease (HD) have been slowed by the inability to complete enrollment in a timely manner. We report a successful advocacy-based recruiting approach at Evergreen Neuroscience Institute, a new Huntington Study Group (HSG) investigative site that lacked an HD patient base. By partnering with community advocates and utilizing web-based advocacy group alerts, Evergreen ranked third of 27 North American sites conducting the Study of ACR16 for the Treatment of Huntington's disease (HART) for number of participants, and first for rate of recruitment -- all while decreasing the time and financial resources needed for site-based recruiting. To our knowledge this is the first published outcome study for advocacy recruiting in any disease population.

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