Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort (NCT01574053)
๐ฉบ Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: University of Alabama โ Birmingham, Alabama
Age range: 18 Years
๐ "Do I Qualify?" โ 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria โ
๐ All Participating Trial Locations (183 Sites)
Showing the first 25 of 183 sites.
- University of Alabama โ Birmingham, Alabama
- St. Joseph's Hospital and Medical Center โ Phoenix, Arizona
- University of California - Irvine Medical Center โ Irvine, California
- Loma Linda Medical Center โ Loma Linda, California
- University of California - Los Angeles โ Los Angeles, California
- University of California - Davis โ Sacramento, California
- University of California - San Diego โ San Diego, California
- University of California - San Francisco โ San Francisco, California
- Cenexel Rocky Mountain Clinical Research, LLC โ Englewood, Colorado
- University of Connecticut โ Farmington, Connecticut
- Georgetown University โ Washington D.C., District of Columbia
- University of Florida Board of Trustees โ Gainesville, Florida
- University of Miami โ Miami, Florida
- University of South Florida, HDSA Center of Excellence at USF โ Tampa, Florida
- Emory University, Wesley Woods Health Center โ Atlanta, Georgia
- Georgia Health Sciences University โ Augusta, Georgia
- Northwestern University โ Chicago, Illinois
- University of Chicago โ Chicago, Illinois
- Rush University Medical Center โ Chicago, Illinois
- University of Illinois College of Medicine at Rockford โ Rockford, Illinois
- Indiana University โ Indianapolis, Indiana
- University of Iowa โ Iowa City, Iowa
- University of Kansas Medical Center โ Kansas City, Kansas
- Hereditary Neurological Disease Center โ Wichita, Kansas
- University of Louisville โ Louisville, Kentucky
๐ Contact the Study Coordinator
Phone: (205) 996-2807
Email: jltidwell@uabmc.edu
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
๐ฐ Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA ยง 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Huntington's Disease
- Safety and Proof-of-Concept (POC) Study With AMT-130 in Adults With Early Manifest Huntington's Disease โ Birmingham, Alabama
- HDClarity: a Multi-site Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington's Disease โ Englewood, Colorado
- A Study to Evaluate ALN-HTT02 in Adult Patients With Huntington's Disease โ Edmonton,
Explore by condition: All Huntington's Disease clinical trials
๐ก How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.