Cooperative Huntington's Observational Research Trial
1 other identifier
observational
5,000
3 countries
52
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Feb 2006
Longer than P75 for all trials
52 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
February 1, 2006
CompletedFirst Submitted
Initial submission to the registry
April 10, 2006
CompletedFirst Posted
Study publicly available on registry
April 12, 2006
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 1, 2020
CompletedStudy Completion
Last participant's last visit for all outcomes
December 1, 2020
CompletedMarch 7, 2011
March 1, 2011
14.8 years
April 10, 2006
March 4, 2011
Conditions
Keywords
Eligibility Criteria
1. An individual of any age that is affected by Huntington's disease 2. An individual 18 years of age or older, who has tested positive for the HD gene 3. An individual 18 years of age or older who is a parent, sibling or child of an individual affected by HD 4. An older adolescent 15 to 17 years of age, who has a parent affected by HD enrolled in COHORT, or a parent who has tested positive for the HD gene enrolled in COHORT (at select sites) 5. Grandparents and grandchildren of anyone participating in COHORT who fulfills the requirements of (the above) category (1) or (2) 6. HD family members who have no risk for HD due to no family history (spouses or caregivers) 7. HD family members who have undergone DNA testing and does not carry the genetic mutation responsible for HD.
You may qualify if:
- (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.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- HP Therapeutics Foundationlead
- Huntington Study Groupcollaborator
Study Sites (52)
University of Alabama at Birmingham
Birmingham, Alabama, United States
UCLA School of Medicine
Los Angeles, California, United States
University of California, Davis
Sacramento, California, United States
University of California, San Diego
San Diego, California, United States
University of California, San Francisco
San Francisco, California, 94143, United States
Colorado Neurological Institute
Littleton, Colorado, United States
University of Connecticut
Hartford, Connecticut, United States
Institutue for Neurodegenerative Disorders
New Haven, Connecticut, United States
University of Miami School of Medicine
Miami, Florida, United States
University of South Florida
Tampa, Florida, United States
Emory University
Atlanta, Georgia, United States
Medical College of Georgia
Augusta, Georgia, United States
Rush University Medical Center
Chicago, Illinois, United States
University of Chicago
Chicago, Illinois, United States
Indiana University School of Medicine
Indianapolis, Indiana, United States
University of Iowa
Iowa City, Iowa, United States
University of Kansas Medical Center
Kansas City, Kansas, United States
Hereditary Neurological Disease Center
Wichita, Kansas, United States
University of Louisville
Louisville, Kentucky, 40294, United States
Johns Hopkins University
Baltimore, Maryland, United States
University of Maryland
Baltimore, Maryland, United States
Boston University School of Medicine
Boston, Massachusetts, United States
Massachusetts General Hospital
Boston, Massachusetts, United States
Hennepin County Medical Center
Minneapolis, Minnesota, United States
Washington University School of Medicine
St Louis, Missouri, United States
Albany Medical College
Albany, New York, United States
Columbia University
New York, New York, United States
University of Rochester
Rochester, New York, United States
Duke University Medical Center
Durham, North Carolina, United States
Wake Forest University Baptist Medical Center
Winston-Salem, North Carolina, United States
University of Cincinnati
Cincinnati, Ohio, United States
The Cleveland Clinic
Cleveland, Ohio, United States
Ohio State University
Columbus, Ohio, United States
University of Pennsylvania
Philadelphia, Pennsylvania, United States
University of Pittsburgh
Pittsburgh, Pennsylvania, United States
University of Tennessee-Memphis
Memphis, Tennessee, United States
Southwestern Medical Center
Dallas, Texas, 75390, United States
Baylor College of Medicine
Houston, Texas, United States
University of Utah
Salt Lake City, Utah, 84108, United States
University of Virginia
Charlottesville, Virginia, United States
Booth Gardner Parkinsons Center
Kirkland, Washington, 98034, United States
Westmead Hospital
Wentworthville, New South Wales, Australia
The University of Melbourne
Kew, Victoria, Australia
Graylands, Selby-Lemnos & Special Care Health Services
Perth, Western Australia, 6910, Australia
University of Calgary Medical Clinic
Calgary, Alberta, Canada
University of British Columbia
Vancouver, British Columbia, Canada
Movement Disorder Clinic Deer Lodge Centre
Winnipeg, Manitoba, Canada
Movement Disorders Clinic, Deer Lodge Centre
Winnipeg, Manitoba, Canada
Halifax Infirmary
Halifax, Nova Scotia, B3H1V7, Canada
London Health Sciences Centre
London, Ontario, N6A 5A5, Canada
The Centre for Addiction and Mental Health
Markham, Ontario, Canada
Hotel-Dieu Hospital-CHUM
Montreal, Quebec, Canada
Related Publications (3)
Connors MH, Teixeira-Pinto A, Loy CT. Psychosis and longitudinal outcomes in Huntington disease: the COHORT Study. J Neurol Neurosurg Psychiatry. 2020 Jan;91(1):15-20. doi: 10.1136/jnnp-2019-320646. Epub 2019 Oct 13.
PMID: 31611263DERIVEDDorsey ER, Beck CA, Darwin K, Nichols P, Brocht AF, Biglan KM, Shoulson I; Huntington Study Group COHORT Investigators. Natural history of Huntington disease. JAMA Neurol. 2013 Dec;70(12):1520-30. doi: 10.1001/jamaneurol.2013.4408.
PMID: 24126537DERIVEDHuntington Study Group COHORT Investigators; Dorsey E. Characterization of a large group of individuals with huntington disease and their relatives enrolled in the COHORT study. PLoS One. 2012;7(2):e29522. doi: 10.1371/journal.pone.0029522. Epub 2012 Feb 16.
PMID: 22359536DERIVED
Related Links
Biospecimen
Blood, DNA and Urine
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Ira Shoulson, MD
University of Rochester/Huntington Study Group
Central Study Contacts
Study Design
- Study Type
- observational
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
Study Record Dates
First Submitted
April 10, 2006
First Posted
April 12, 2006
Study Start
February 1, 2006
Primary Completion
December 1, 2020
Study Completion
December 1, 2020
Last Updated
March 7, 2011
Record last verified: 2011-03