Cooperative Huntington's Observational Research Trial

HP Therapeutics Foundation5,000 enrolled

Overview

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.

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.

Study Type

OBSERVATIONAL

Enrollment

5,000

Conditions

Huntington Disease

Eligibility

Sex: ALLHealthy volunteers:

Medical Language ↔ Plain English

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

Locations (52)

Central Contacts

Huntington Study Group

CONTACT

800-487-7671

Data from ClinicalTrials.gov

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University of Alabama at Birmingham

Birmingham, Alabama, United States

TERMINATED

UCLA School of Medicine

Los Angeles, California, United States

RECRUITING

University of California, Davis

Sacramento, California, United States

RECRUITING

University of California, San Diego

San Diego, California, United States

RECRUITING

University of California, San Francisco

San Francisco, California, United States

RECRUITING

Colorado Neurological Institute

Littleton, Colorado, United States

RECRUITING

University of Connecticut

Hartford, Connecticut, United States

RECRUITING

Institutue for Neurodegenerative Disorders

New Haven, Connecticut, United States

RECRUITING

University of Miami School of Medicine

Miami, Florida, United States

RECRUITING

University of South Florida

Tampa, Florida, United States

RECRUITING

...and 42 more locations