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Advocacy Recruiting for Huntington's Disease Clinical Trials. 2011

Lavonne Goodman, and Cherrie Sia, and Roger Carnes, and Louise Vetter, and Fred Taubman, and Charles S Venuto, and Andrew McGarry, and Karl Kieburtz, and Pinky Agarwal
Huntington's Disease Drug Works; Evergreen Neuroscience Institute; Northwest Chapter Huntington's Disease Society of America; Huntington's Disease Society of America and University of Rochester Medical Center.

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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