title: Advocacy Recruiting for Huntington's Disease Clinical Trials.
abstract: 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.
authors.affiliation: 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.
authors.forename: Lavonne
authors.initials: L
authors.lastname: Goodman
authors.forename: Cherrie
authors.initials: C
authors.lastname: Sia
authors.forename: Roger
authors.initials: R
authors.lastname: Carnes
authors.forename: Louise
authors.initials: L
authors.lastname: Vetter
authors.forename: Fred
authors.initials: F
authors.lastname: Taubman
authors.forename: Charles S
authors.initials: CS
authors.lastname: Venuto
authors.forename: Andrew
authors.initials: A
authors.lastname: McGarry
authors.forename: Karl
authors.initials: K
authors.lastname: Kieburtz
authors.forename: Pinky
authors.initials: P
authors.lastname: Agarwal