Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
ConditionHuntington's Disease
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorCHDI Foundation, Inc.
About this trial
Enroll-HD is a longitudinal, observational, multinational study that integrates two former Huntington's disease (HD) registries-REGISTRY in Europe, and COHORT in North America and Australasia-while also expanding to include sites in Latin America. More than 30,000 participants have now enrolled into the study. With annual assessments and no end date, Enroll-HD has built a large and rich database of longitudinal clinical data and biospecimens that form the basis for studies developing tools and biomarkers for progression and prognosis, identifying clinically-relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies. Periodic cuts of the database are now available to any interested researcher to use in their research - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.
Eligibility criteria
Qualifiers
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.
Manifest/Motor-manifest HD: Carriers with clinical features that are regarded in the opinion of the investigator as diagnostic of HD.
Pre-Manifest/-Motor-manifest HD: Carriers without clinical features regarded as diagnostic of HD.
Disqualifiers
Individuals who do not meet inclusion criteria,
Individuals with choreic movement disorders in the context of a negative test for the HD gene mutation.
For Community Controls: those individuals with a major central nervous system disorder will be excluded (e.g. stroke, Parkinson's disease, multiple sclerosis, etc.).
Trial design
Treatments tested in this trial
- Not listed
Trial groups
No trial groups listed
Locations
183Argentina
Instituto de Neurociencias Buenos Aires (INEBA) Buenos Aires Argentina
Australia
Westmead Hospital2145, WestmeadNew South Wales, Australia
Monash University3800, MelbourneVictoria, Australia
The Neurosciences Unit - North Metropolitan Hospital6010, PerthWestern Australia, Australia
Sponsors and collaborators
CHDI Foundation, Inc.
Lead sponsor
Source ClinicalTrials.gov