Enroll-HD: A Prospective Registry Study in a Global Huntington's Disease (HD) Cohort
Research Question:
The Enroll-HD study will develop a repository of 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).
Basic Study Information
Purpose:
Enroll-HD 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 20,000 participants have now enrolled in 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. You may be eligible for this study if you have HD, carry the HD gene without
clinical symptoms of HD) or do not have the HD gene but have a close relative with
HD.
Study Reference #: STUDY00000351
Lead Researcher (Principal Investigator)
Lead Researcher:
Frederick Marshall
Study Contact Information
Study Coordinator: Hannah Mesmer
Phone: (585) 341-7577
Email: hannah_mesmer@urmc.rochester.edu
Additional Study Details
Parking:
Free
Reimbursement:
Yes
Learn More About These Conditions
More information about Huntington Disease
More information about Huntington's chorea
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