Advocacy Recruiting for Huntington’s Disease Clinical Trials | Zendy

LaVonne Goodman | Zendy; Cherrie Sia | Zendy; Roger Carnes | Zendy; Louise Vetter | Zendy; Fred Taubman | Zendy; Charles S. Venuto | Zendy; Andrew McGarry | Zendy; Karl Kieburtz | Zendy; Pinky Agarwal | Zendy

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Advocacy Recruiting for Huntington’s Disease Clinical Trials

Author(s) -

LaVonne Goodman,

Cherrie Sia,

Roger Carnes,

Louise Vetter,

Fred Taubman,

Charles S. Venuto,

Andrew McGarry,

Karl Kieburtz,

Pinky Agarwal

Publication year - 2011

Publication title -

plos currents

Language(s) - English

Resource type - Journals

SCImago Journal Rank - 0.282

H-Index - 49

ISSN - 2157-3999

DOI - 10.1371/currents.rrn1230

Subject(s) - huntington's disease , disease , clinical trial , medicine , population , web site , gerontology , family medicine , world wide web , computer science , environmental health , the internet

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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