Cooperative Huntington's Observational Research Trial

Last updated: March 4, 2011
Sponsor: HP Therapeutics Foundation
Overall Status: Active - Recruiting

Phase

N/A

Condition

Dyskinesias

Treatment

N/A

Clinical Study ID

NCT00313495
COHORT
  • All Genders
  • Accepts Healthy Volunteers

Study Summary

The purpose of this study is to collect prospective data from individuals who are part of a Huntington Disease (HD) family, in order to relate phenotypes between individuals and families with each other and genetic factors in order to learn more about HD, develop potential treatments for HD, and to plan for future research studies of experimental drugs aimed at slowing or postponing the onset and progression of HD.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • (1) MANIFEST/PRE-MANIFEST HD: Individuals of any age who are affected by HD OR anindividual 18 years or older who - has tested positive for the HD gene.

  • (2) INDIVIDUALS AT RISK: An individual 18 years or older who has not undergone DNAtesting for the mutation responsible for HD and who is a first degree relative (parent, sibling, child) of an individual with Manifest or pre-manifest HD OR an olderadolescent 15 to 17 years of age who has a parent with manifest HD or pre-manifest HDenrolled in COHORT.

  • (3) ADULTS AT SECONDARY RISK: An individual 18 years of age or older who has notundergone DNA testing for the mutation responsible for HD and is a grandparent orgrandchild of an individual enrolled in COHORT who has manifest HD or pre-manifest HD

  • (4) CONTROL: A spouse or caregiver, 18 years of age or older, of an individualenrolled in COHORT who has manifest HD or pre-manifest HD

  • (5) ADULT GENE NEGATIVE: An individual, 18 years of age or older, with a familyhistory of HD who has undergone DNA testing and does not carry the genetic mutationresponsible for HD.

Exclusion

Exclusion Criteria:

  • (1) Anyone who does not fit the inclusion criteria

Study Design

Total Participants: 5000
Study Start date:
February 01, 2006
Estimated Completion Date:
December 31, 2020

Study Description

COHORT (Cooperative Huntington Observational Research Trial) is a coordinated research effort by Huntington Study Group research centers worldwide to prospectively collect data from consenting individuals who are affected by Huntington's disease (HD) and who are part of an HD family. The systematically accrued data from annual prospective assessments will relate clinical characteristics (phenotypes) between families with genetic and environmental factors. The knowledge from these relationships will better inform us about the onset and progression of HD, help identify potential interventions for HD, and aid in planning research studies of experimental treatments aimed at slowing or postponing the onset of HD. The consented collection of biological samples will further provide research material and correlative data for scientists to identify biomarkers that parallel the development and progression of HD. Identification of biomarkers will in turn contribute to our understanding of HD and enhance the efficiency and power of disease-modifying therapeutic trials.

Connect with a study center

  • Westmead Hospital

    Wentworthville, New South Wales
    Australia

    Active - Recruiting

  • The University of Melbourne

    Kew, Victoria
    Australia

    Active - Recruiting

  • Graylands, Selby-Lemnos & Special Care Health Services

    Perth, Western Australia 6910
    Australia

    Active - Recruiting

  • University of Calgary Medical Clinic

    Calgary, Alberta
    Canada

    Active - Recruiting

  • University of British Columbia

    Vancouver, British Columbia
    Canada

    Active - Recruiting

  • Movement Disorder Clinic Deer Lodge Centre

    Winnipeg, Manitoba
    Canada

    Active - Recruiting

  • Movement Disorders Clinic, Deer Lodge Centre

    Winnipeg, Manitoba
    Canada

    Active - Recruiting

  • Halifax Infirmary

    Halifax, Nova Scotia B3H1V7
    Canada

    Active - Recruiting

  • London Health Sciences Centre

    London, Ontario N6A 5A5
    Canada

    Active - Recruiting

  • The Centre for Addiction and Mental Health

    Markham, Ontario
    Canada

    Active - Recruiting

  • Hotel-Dieu Hospital-CHUM

    Montreal, Quebec
    Canada

    Active - Recruiting

  • University of Alabama at Birmingham

    Birmingham, Alabama
    United States

    Terminated

  • UCLA School of Medicine

    Los Angeles, California
    United States

    Active - Recruiting

  • University of California, Davis

    Sacramento, California
    United States

    Active - Recruiting

  • University of California, San Diego

    San Diego, California
    United States

    Active - Recruiting

  • University of California, San Francisco

    San Francisco, California 94143
    United States

    Active - Recruiting

  • Colorado Neurological Institute

    Littleton, Colorado
    United States

    Active - Recruiting

  • University of Connecticut

    Hartford, Connecticut
    United States

    Active - Recruiting

  • Institutue for Neurodegenerative Disorders

    New Haven, Connecticut
    United States

    Active - Recruiting

  • University of Miami School of Medicine

    Miami, Florida
    United States

    Active - Recruiting

  • University of South Florida

    Tampa, Florida
    United States

    Active - Recruiting

  • Emory University

    Atlanta, Georgia
    United States

    Active - Recruiting

  • Medical College of Georgia

    Augusta, Georgia
    United States

    Active - Recruiting

  • Rush University Medical Center

    Chicago, Illinois
    United States

    Active - Recruiting

  • University of Chicago

    Chicago, Illinois
    United States

    Active - Recruiting

  • Indiana University School of Medicine

    Indianapolis, Indiana
    United States

    Active - Recruiting

  • University of Iowa

    Iowa City, Iowa
    United States

    Active - Recruiting

  • University of Kansas Medical Center

    Kansas City, Kansas
    United States

    Active - Recruiting

  • Hereditary Neurological Disease Center

    Wichita, Kansas
    United States

    Active - Recruiting

  • University of Louisville

    Louisville, Kentucky 40294
    United States

    Active - Recruiting

  • Johns Hopkins University

    Baltimore, Maryland
    United States

    Active - Recruiting

  • University of Maryland

    Baltimore, Maryland
    United States

    Active - Recruiting

  • Boston University School of Medicine

    Boston, Massachusetts
    United States

    Active - Recruiting

  • Massachusetts General Hospital

    Boston, Massachusetts
    United States

    Active - Recruiting

  • Hennepin County Medical Center

    Minneapolis, Minnesota
    United States

    Site Not Available

  • Washington University School of Medicine

    St. Louis, Missouri
    United States

    Active - Recruiting

  • Albany Medical College

    Albany, New York
    United States

    Active - Recruiting

  • Columbia University

    New York, New York
    United States

    Active - Recruiting

  • University of Rochester

    Rochester, New York
    United States

    Active - Recruiting

  • Duke University Medical Center

    Durham, North Carolina
    United States

    Active - Recruiting

  • Wake Forest University Baptist Medical Center

    Winston Salem, North Carolina
    United States

    Active - Recruiting

  • University of Cincinnati

    Cincinnati, Ohio
    United States

    Active - Recruiting

  • The Cleveland Clinic

    Cleveland, Ohio
    United States

    Active - Recruiting

  • Ohio State University

    Columbus, Ohio
    United States

    Active - Recruiting

  • University of Pennsylvania

    Philadelphia, Pennsylvania
    United States

    Active - Recruiting

  • University of Pittsburgh

    Pittsburgh, Pennsylvania
    United States

    Active - Recruiting

  • University of Tennessee-Memphis

    Memphis, Tennessee
    United States

    Active - Recruiting

  • Southwestern Medical Center

    Dallas, Texas 75390
    United States

    Active - Recruiting

  • Baylor College of Medicine

    Houston, Texas
    United States

    Active - Recruiting

  • University of Utah

    Salt Lake City, Utah 84108
    United States

    Active - Recruiting

  • University of Virginia

    Charlottesville, Virginia
    United States

    Active - Recruiting

  • Booth Gardner Parkinsons Center

    Kirkland, Washington 98034
    United States

    Active - Recruiting

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