Cooperative Huntington's Observational Research Trial
- Conditions
- Huntington Disease
- Registration Number
- NCT00313495
- Lead Sponsor
- HP Therapeutics Foundation
- Brief 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.
- Detailed 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.
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 5000
- (1) MANIFEST/PRE-MANIFEST HD: Individuals of any age who are affected by HD OR an individual 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 DNA testing 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 older adolescent 15 to 17 years of age who has a parent with manifest HD or pre-manifest HD enrolled in COHORT.
- (3) ADULTS AT SECONDARY RISK: An individual 18 years of age or older who has not undergone DNA testing for the mutation responsible for HD and is a grandparent or grandchild 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 individual enrolled in COHORT who has manifest HD or pre-manifest HD
- (5) ADULT GENE NEGATIVE: An individual, 18 years of age or older, with a family history of HD who has undergone DNA testing and does not carry the genetic mutation responsible for HD.
- (1) Anyone who does not fit the inclusion criteria
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method
Related Research Topics
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Trial Locations
- Locations (52)
University of Pennsylvania
🇺🇸Philadelphia, Pennsylvania, United States
Southwestern Medical Center
🇺🇸Dallas, Texas, United States
The Centre for Addiction and Mental Health
🇨🇦Markham, Ontario, Canada
University of Miami School of Medicine
🇺🇸Miami, Florida, United States
Indiana University School of Medicine
🇺🇸Indianapolis, Indiana, United States
University of Cincinnati
🇺🇸Cincinnati, Ohio, United States
Duke University Medical Center
🇺🇸Durham, North Carolina, United States
University of California, San Francisco
🇺🇸San Francisco, California, United States
Colorado Neurological Institute
🇺🇸Littleton, Colorado, United States
UCLA School of Medicine
🇺🇸Los Angeles, California, United States
University of California, San Diego
🇺🇸San Diego, California, United States
Institutue for Neurodegenerative Disorders
🇺🇸New Haven, Connecticut, United States
University of Iowa
🇺🇸Iowa City, Iowa, United States
Emory University
🇺🇸Atlanta, Georgia, United States
University of California, Davis
🇺🇸Sacramento, California, United States
Medical College of Georgia
🇺🇸Augusta, Georgia, United States
The Cleveland Clinic
🇺🇸Cleveland, Ohio, United States
University of Utah
🇺🇸Salt Lake City, Utah, United States
Washington University School of Medicine
🇺🇸St. Louis, Missouri, United States
University of Connecticut
🇺🇸Hartford, Connecticut, United States
University of Calgary Medical Clinic
🇨🇦Calgary, Alberta, Canada
University of Alabama at Birmingham
🇺🇸Birmingham, Alabama, United States
University of South Florida
🇺🇸Tampa, Florida, United States
Massachusetts General Hospital
🇺🇸Boston, Massachusetts, United States
Hennepin County Medical Center
🇺🇸Minneapolis, Minnesota, United States
Boston University School of Medicine
🇺🇸Boston, Massachusetts, United States
Hereditary Neurological Disease Center
🇺🇸Wichita, Kansas, United States
Rush University Medical Center
🇺🇸Chicago, Illinois, United States
University of Chicago
🇺🇸Chicago, Illinois, United States
Ohio State University
🇺🇸Columbus, Ohio, United States
Columbia University
🇺🇸New York, New York, United States
Hotel-Dieu Hospital-CHUM
🇨🇦Montreal, Quebec, Canada
University of British Columbia
🇨🇦Vancouver, British Columbia, Canada
Albany Medical College
🇺🇸Albany, New York, United States
Booth Gardner Parkinsons Center
🇺🇸Kirkland, Washington, United States
Graylands, Selby-Lemnos & Special Care Health Services
🇦🇺Perth, Western Australia, Australia
London Health Sciences Centre
🇨🇦London, Ontario, Canada
University of Rochester
🇺🇸Rochester, New York, United States
Wake Forest University Baptist Medical Center
🇺🇸Winston Salem, North Carolina, United States
Johns Hopkins University
🇺🇸Baltimore, Maryland, United States
University of Maryland
🇺🇸Baltimore, Maryland, United States
University of Virginia
🇺🇸Charlottesville, Virginia, United States
University of Pittsburgh
🇺🇸Pittsburgh, Pennsylvania, United States
Halifax Infirmary
🇨🇦Halifax, Nova Scotia, Canada
University of Tennessee-Memphis
🇺🇸Memphis, Tennessee, United States
Westmead Hospital
🇦🇺Wentworthville, New South Wales, Australia
Movement Disorder Clinic Deer Lodge Centre
🇨🇦Winnipeg, Manitoba, Canada
The University of Melbourne
🇦🇺Kew, Victoria, Australia
Baylor College of Medicine
🇺🇸Houston, Texas, United States
Movement Disorders Clinic, Deer Lodge Centre
🇨🇦Winnipeg, Manitoba, Canada
University of Louisville
🇺🇸Louisville, Kentucky, United States
University of Kansas Medical Center
🇺🇸Kansas City, Kansas, United States