Cooperative Huntington’s Observational Research Trial

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.

Official Title

Cooperative Huntington’s Observational Research Trial

Conditions

Huntington Disease

Study Type

Observational

Study Design

Natural History, Longitudinal, Defined Population, Prospective Study

Further Details

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 Start

February 2006

Eligibility & Criteria

• Genders Eligible for Study: Both
• Accepts Healthy Volunteers

Inclusion Criteria:Any of the following:

1. Those affected by Huntington’s disease (HD)
2. Those who have tested positive for the HD gene
3. Parents, siblings, and children of an individual affected by HD or an individual who tested positive for the HD gene
4. Grandparents and grandchildren of anyone participating in COHORT who fulfills the requirements of (the above) category (1) or (2).
5. HD family members who have no risk for HD due to no family history (spouses) or negative gene testing. These individuals must have an affected or gene positive spouse or family member participating in COHORT to be included.
6. Those under 18 years of age may participate ONLY if they have HD

Total Enrolment

5000

Contact Details

Westmead Hospital, Wentworthville, New South Wales, Australia; Recruiting

• Jane Griffith: 011-61-2-98456793; jane_griffith@wsahs.nsw.gov.au

The University of Melbourne, Kew, Victoria, Australia; Recruiting

• Olga Yastrubetskaya: 61 3 9816 0436; olgay@unimelb.edu.au

Graylands, Selby-Lemnos & Special Care Health Services, Mt. Claremont, Western Australia, Australia; Recruiting

• Mark Woodman: 61-8-9385-6813; mark.woodman@health.wa.gov.ca