Huntington's Disease Cohort Prospective Registry Study
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.
In order to participate you must meet the following criteria:
- Are in the carriers group: This group comprises the primary study population and consists of individuals who carry the HD gene expansion mutation.
- Are in the controls group: This group comprises the comparator study population and consists of individuals who do not carry the HD expansion mutation.
You will be excluded from the study if any of the following criteria apply to 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.