Cooperative Huntington's Observational Research Trial

Status unconfirmed

Conditions studied: Huntington Disease

In brief

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.

Key facts

Study ID

NCT00313495

Run by

HP Therapeutics Foundation

People needed

5000

Starts

2006-02-01

Expected to finish

2020-12-01

Last updated by the study team

2011-03-07

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

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.

You may not qualify if…

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

Where it is running

• UCLA School of Medicine — Los Angeles, California, United States (enrolling)
• Albany Medical College — Albany, New York, United States (enrolling)
• University of California, San Diego — San Diego, California, United States (enrolling)
• University of California, San Francisco — San Francisco, California, United States (enrolling)
• University of California, Davis — Sacramento, California, United States (enrolling)
• University of Connecticut — Hartford, Connecticut, United States (enrolling)
• Institutue for Neurodegenerative Disorders — New Haven, Connecticut, United States (enrolling)
• University of Miami School of Medicine — Miami, Florida, United States (enrolling)
• University of South Florida — Tampa, Florida, United States (enrolling)
• Emory University — Atlanta, Georgia, United States (enrolling)
• Colorado Neurological Institute — Littleton, Colorado, United States (enrolling)
• Rush University Medical Center — Chicago, Illinois, United States (enrolling)
• University of Chicago — Chicago, Illinois, United States (enrolling)
• Indiana University School of Medicine — Indianapolis, Indiana, United States (enrolling)
• University of Iowa — Iowa City, Iowa, United States (enrolling)
• University of Kansas Medical Center — Kansas City, Kansas, United States (enrolling)
• Hereditary Neurological Disease Center — Wichita, Kansas, United States (enrolling)
• University of Louisville — Louisville, Kentucky, United States (enrolling)
• Johns Hopkins University — Baltimore, Maryland, United States (enrolling)
• University of Maryland — Baltimore, Maryland, United States (enrolling)
• Boston University School of Medicine — Boston, Massachusetts, United States (enrolling)
• Massachusetts General Hospital — Boston, Massachusetts, United States (enrolling)
• Medical College of Georgia — Augusta, Georgia, United States (enrolling)
• Washington University School of Medicine — St Louis, Missouri, United States (enrolling)
• Columbia University — New York, New York, United States (enrolling)

Full record on ClinicalTrials.gov

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