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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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
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author Goodman, LaVonne
Sia, Cherrie
Carnes, Roger
Vetter, Louise
Taubman, Fred
Venuto, Charles S.
McGarry, Andrew
Kieburtz, Karl
Agarwal, Pinky
author_facet Goodman, LaVonne
Sia, Cherrie
Carnes, Roger
Vetter, Louise
Taubman, Fred
Venuto, Charles S.
McGarry, Andrew
Kieburtz, Karl
Agarwal, Pinky
author_sort Goodman, LaVonne
collection PubMed
description 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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spelling pubmed-30824012011-04-28 Advocacy Recruiting for Huntington’s Disease Clinical Trials Goodman, LaVonne Sia, Cherrie Carnes, Roger Vetter, Louise Taubman, Fred Venuto, Charles S. McGarry, Andrew Kieburtz, Karl Agarwal, Pinky PLoS Curr Huntington Disease 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. Public Library of Science 2011-04-12 /pmc/articles/PMC3082401/ /pubmed/21532913 http://dx.doi.org/10.1371/currents.RRN1230 Text en http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited.
spellingShingle Huntington Disease
Goodman, LaVonne
Sia, Cherrie
Carnes, Roger
Vetter, Louise
Taubman, Fred
Venuto, Charles S.
McGarry, Andrew
Kieburtz, Karl
Agarwal, Pinky
Advocacy Recruiting for Huntington’s Disease Clinical Trials
title Advocacy Recruiting for Huntington’s Disease Clinical Trials
title_full Advocacy Recruiting for Huntington’s Disease Clinical Trials
title_fullStr Advocacy Recruiting for Huntington’s Disease Clinical Trials
title_full_unstemmed Advocacy Recruiting for Huntington’s Disease Clinical Trials
title_short Advocacy Recruiting for Huntington’s Disease Clinical Trials
title_sort advocacy recruiting for huntington’s disease clinical trials
topic Huntington Disease
url 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
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