Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort

Conditions

• Huntington's Disease

Eligibility Criteria

Sex

ALL

Age

18 Years - N/A

Healthy Volunteers

Accepted

Study Details

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.

Key Dates

Start date

Jul 31, 2012

Status verified

Feb 2024

Primary completion

Jan 31, 2062

Completion

Jan 31, 2062

Study Design

Enrollment

35,000 participants (estimated)

Primary Outcome Measure

Motor Assessments: Unified Huntington's Disease Rating Scale (UHDRS) 99 Motor, UHDRS '99 Diagnostic Confidence Level [ Time Frame: through study completion, an average of 1 year ]

Central Contacts

• Noopur Modi
  [email protected]

Locations (62)

Find similar trials in Birmingham, AL

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