Cooperative Huntington's Observational Research Trial
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The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. |
ClinicalTrials.gov Identifier: NCT00313495 |
Recruitment Status : Unknown
Verified March 2011 by HP Therapeutics Foundation.
Recruitment status was: Recruiting
First Posted : April 12, 2006
Last Update Posted : March 7, 2011
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Condition or disease |
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Huntington Disease |
Study Type : | Observational |
Estimated Enrollment : | 5000 participants |
Time Perspective: | Prospective |
Official Title: | Cooperative Huntington's Observational Research Trial |
Study Start Date : | February 2006 |
Estimated Primary Completion Date : | December 2020 |
Estimated Study Completion Date : | December 2020 |


Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study: | Child, Adult, Older Adult |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | Yes |
Sampling Method: | Non-Probability Sample |
- An individual of any age that is affected by Huntington's disease
- An individual 18 years of age or older, who has tested positive for the HD gene
- An individual 18 years of age or older who is a parent, sibling or child of an individual affected by HD
- 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)
- Grandparents and grandchildren of anyone participating in COHORT who fulfills the requirements of (the above) category (1) or (2)
- HD family members who have no risk for HD due to no family history (spouses or caregivers)
- HD family members who have undergone DNA testing and does not carry the genetic mutation responsible for HD.
Inclusion Criteria:
- (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.
Exclusion Criteria:
- (1) Anyone who does not fit the inclusion criteria

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00313495
Contact: Huntington Study Group | 800-487-7671 |

Principal Investigator: | Ira Shoulson, MD | University of Rochester/Huntington Study Group |
Publications automatically indexed to this study by ClinicalTrials.gov Identifier (NCT Number):
Responsible Party: | Ira Shoulson, MD/Principal Investigator, University of Rochester |
ClinicalTrials.gov Identifier: | NCT00313495 |
Other Study ID Numbers: |
COHORT |
First Posted: | April 12, 2006 Key Record Dates |
Last Update Posted: | March 7, 2011 |
Last Verified: | March 2011 |
Huntington disease, observational, family members, biomarker |
Huntington Disease Basal Ganglia Diseases Brain Diseases Central Nervous System Diseases Nervous System Diseases Dementia Chorea Dyskinesias |
Movement Disorders Heredodegenerative Disorders, Nervous System Neurodegenerative Diseases Genetic Diseases, Inborn Cognition Disorders Neurocognitive Disorders Mental Disorders |