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Huntington's Disease Cohort Prospective Registry Study

Clinical Trial Title: 
ENROLL-HD: A Prospective Registry Study in a Global Huntington’s Disease Cohort
Clinical Trial Protocol ID: 
12010202
Clinical Trial Investigator Name: 
Kathleen Shannon, MD
Clinical Trial Protocol Description: 

Enroll-HD is a longitudinal, observational, multinational study that will integrate two existing Huntington's disease (HD) registries, REGISTRY in Europe and COHORT in North America and Australia, while also expanding to include sites in Latin America and Asia. With no end date and annual assessments, the primary objective of Enroll-HD is to develop a comprehensive repository of prospective and systematically collected clinical research data (demography, clinical features, family history, genetic characteristics) and biological specimens (blood) from individuals with manifest HD, unaffected individuals known to carry the HD mutation or at risk of carrying the HD mutation, and control research participants (e.g., spouses, siblings or offspring of HD mutation carriers known not to carry the HD mutation). This database will serve as a basis for future studies aimed at developing tools and biomarkers for progression and prognosis, identifying clinically relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies. The researchers at over 200 sites in roughly 30 countries will enroll as many individuals as possible into the registry.

Clinical Trial Eligibility Criteria: 

You may be eligible to participate in this study if you:

  • Carriers: This group comprises the primary study population and consists of individuals who carry the HD gene expansion mutation
  • Controls: This group comprises the comparator study population and consists of individuals who do not carry the HD expansion mutation

You will be excluded from this study if you:

  • Do not meet inclusion criteria
  • Have choreic movement disorders in the context of a negative test for the HD gene mutation
  • For community controls: have a major central nervous system disorder will be excluded (e.g. stroke, Parkinson disease, multiple sclerosis, etc.)

This is a partial list of eligibility requirements. To inquire about your eligibility, please call the contact number provided. If you wish to inquire via email, please include the title of the study in your message.

Clinical Trial Area: 
Parkinson's Disease and Other Movement Disorders
Contact Phone: 
(312) 942-5003
Contact Name: 
Jean A. Jaglin