๐Ÿ›๏ธ Verified NIH Record โ€ข Updated 2024-02-26

Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort (NCT01574053)

๐ŸŸข Recruiting Interventional Protocol ๐Ÿ“Š Observational Clinical Research Sponsor: CHDI Foundation, Inc.

๐Ÿฉบ 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

๐Ÿ“‹ "Do I Qualify?" โ€” 1-Minute Self Screener

Instant Checklist

Full eligibility criteria are available on the official NIH protocol. View the criteria โ†—

๐Ÿ“ 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

๐Ÿ“ž 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.

๐Ÿ’ฐ 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.

๐Ÿ’ก How to Participate

  1. Check the checklist above to see if you may qualify.
  2. Contact the study coordinator using the phone/email above.
  3. Ask about the visit schedule, what is covered at no cost, and any travel support.
  4. Confirm with your own doctor before making a decision.
๐Ÿ›๏ธ View Official NIH Record โ†—