Enroll-HD is a worldwide observational study for HD families that monitors how HD appears and changes in people over time. The study’s overarching goal is to accelerate the discovery and development of new therapeutics through a better understanding of HD. The study is now generating high-quality clinical and biological data that, once anonymized to protect privacy, is available for use by HD researchers worldwide. The study also serves as a database of volunteers who may be interested in participating in clinical research, including interventional drug trials. Enroll-HD is also looking to improve care for HD patients by identifying the best clinical practice across sites around the world, and will work to distribute the findings to the community.
Enroll-HD is open to people who either have or are at-risk for HD. People who are at-risk but haven’t been tested can take part in Enroll-HD without knowing or being told their genetic status. Further information on all aspects of Enroll-HD can be found at www.Enroll-HD.org.
Status
This study is currently recruiting participants.
Formal Name
Enroll-HD: A Prospective Registry Study in a Global Huntington’s Disease Cohort
Study Type
Observational [Patient Registry]
Purpose
Enroll-HD is a longitudinal, observational, multinational study that integrates two other HD registries, REGISTRY in Europe and COHORT in North America and Australia, while also expanding to include sites in Latin America and Asia. With annual assessments and no end date, Enroll-HD is building a comprehensive database of longitudinal clinical information and biospecimens that will be used to develop tools and biomarkers for disease progression and prognosis, identify clinically-relevant disease characteristics, and establish clearly-defined endpoints for interventional studies.
Canadian Locations and Contact Information
British Columbia
Location: University of British Columbia, Vancouver
Status: Recruiting
Coordinator: Allison Coleman
Phone: 604-822-7739
Alberta
Location: University of Calgary, Movement Disorders Program, Calgary
Status: Recruiting
Coordinator: Lorelei Tainsh (nee Derwent)
Phone: 403-220-8413
Or
Coordinator: Carol Pantella
Phone: 403-220-2276
Location: University of Alberta Hospital, Edmonton
Status: Recruiting
Coordinator: Paul McCann
Phone: 780-407-1614
Ontario
Location: North York General Hospital, Toronto
Status: Recruiting
Coordinator: Clare Gibbons
Phone: 416-756-6788
Location: The Ottawa Hospital Parkinson’s and Movement Disorders Clinic, C2
Civic Campus, 1053 Carling Avenue, B104
Ottawa, ON K1Y 4E9
Principal Investigator: Tiago Mestre
Email: Tmestre@Toh.On.Ca
Phone: 647-302-5513
Primary Coordinator: Rebecca Taylor-Sussex
Email: Rtaylorsussex@Toh.Ca
Phone: 613-737-8899, ext. 10639
Backup Coordinator: Nerehis Tzivanopoulos
Email: Ntzivanopoulos@Toh.Ca
Phone: 613- 798-5555, ext. 19372
Quebec
Location: CHUM Hospital of Notre Dame, Montreal
Status: Recruiting
Coordinator: Anne Phan
Phone: 514-890-8000, ext. 26511
Exclusion Criteria (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 disease, multiple sclerosis, etc.).
- Participants under 18 may be eligible to participate (if they have juvenile Huntington disease).
Source
ClinicalTrials.gov A service of the U.S. National Institutes of Health
Verified April 2015 by CHDI Foundation, Inc.
Information provided by (Responsible Party): CHDI Foundation, Inc.
ClinicalTrials.gov Identifier: NCT01574053
For more detailed information on this study and others and for the most recent updates, please go to clinicaltrials.gov ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.