Last updated on July 2019

Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort


Brief description of study

Enroll-HD is a longitudinal, observational, multinational study that integrates two former Huntington's disease (HD) registriesREGISTRY in Europe, and COHORT in North America and Australasiawhile also expanding to include sites in Latin America. More than 20,000 participants have now enrolled into the study. With annual assessments and no end date, Enroll-HD has built a large and rich database of longitudinal clinical data and biospecimens that form the basis for studies developing tools and biomarkers for progression and prognosis, identifying clinically-relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies. Periodic cuts of the database are now available to any interested researcher to use in their research - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.

Detailed Study Description

The primary objective of Enroll-HD is to develop a comprehensive repository of prospective and systematically collected clinical research data (demography, clinical features, family history, genetic characteristics) and biological specimens (blood) from individuals with manifest HD, unaffected individuals known to carry the HD mutation or at risk of carrying the HD mutation, and control research participants (e.g., spouses, siblings or offspring of HD mutation carriers known not to carry the HD mutation). Enroll-HD is conceived as a broad-based and long-term project to maximize the efficiencies of non-clinical research and participation in clinical research. With 173 clinical sites in 19 countries, Enroll-HD is now the largest HD database available and is accessible to any interested researcher - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.

Clinical Study Identifier: NCT01574053

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Columbia University

New York, NY United States
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University of Cambridge

Cambridge, United Kingdom
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University of Alabama

Birmingham, AL United States
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Loma Linda Medical Center

Loma Linda, CA United States
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Poole Hospital

Poole, United Kingdom
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Sanford Health

Fargo, ND United States
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University of Aberdeen

Aberdeen, United Kingdom
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University of Utah

Salt Lake City, UT United States
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Hospital Son Espases

Palma De Mallorca, Spain
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CETRAM

Santiago, Chile
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University of Iowa

Iowa City, IA United States
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University of Connecticut

Farmington, CT United States
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Georgetown University

Washington, WA United States
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Siloah AG

Bern, Switzerland
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University of Vermont

Burlington, VT United States
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Cardiff University

Cardiff, United Kingdom
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The Walton Centre

Liverpool, United Kingdom
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University of Pennsylvania

Philadelphia, PA United States
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Cleveland Clinic

Cleveland, OH United States
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St. George's Hospital

London, United Kingdom
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University of Cincinatti

Cincinnati, OH United States
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Monash University

Melbourne, Australia
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University of Rochester

Rochester, NY United States
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Vanderbilt University

Nashville, TN United States
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North Bristol NHS Trust

Bristol, United Kingdom
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Tayside Health Board

Dundee, United Kingdom
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Leicestershire Partnership

Narborough, United Kingdom
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NHS Forth Valley

Larbert, United Kingdom
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CHU Gabriel-Montpied

Clermont-Ferrand, France
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Baylor College of Medicine

Houston, TX United States
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Lothian Health Board

Edinburgh, United Kingdom
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Wake Forest School of Medicine

Winston-Salem, NC United States
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Duke University

Durham, NC United States
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The Ohio State University

Columbus, OH United States
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Fife Health Board

Kirkcaldy, United Kingdom
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University of Pittsburgh

Pittsburgh, PA United States
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University of Michigan

Ann Arbor, MI United States
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University of Virginia

Charlottesville, VA United States
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University of Chicago

Chicago, IL United States
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University of Louisville

Louisville, KY United States
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Johns Hopkins University

Baltimore, MD United States
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Wayne State University

Detroit, MI United States
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Cleveland Clinic - Las Vegas

Las Vegas, NV United States
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Albany Medical College

Albany, NY United States
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University of South Carolina

Columbia, SC United States
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Westmead Hospital

Westmead, Australia
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CHU Montpellier

Montpellier, France
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Siloah AG

Gümligen, Switzerland
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Ayrshire Central Hospital

Kilmarnock, United Kingdom
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St. Andrews Healthcare

Northampton, United Kingdom
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Siloah AG

Gümligen, Switzerland
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Siloah AG

Gümligen, Switzerland
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Siloah AG

Gümligen, Switzerland
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Hennepin County Medical Center

Minneapolis, MN United States
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Siloah AG

Gümligen, Switzerland
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Siloah AG

Gümligen, Switzerland
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Siloah AG

Gümligen, Switzerland
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Siloah AG

Gümligen, Switzerland
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Recruitment Status: Open


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