On Saturday, November 10th at the Huntington Study Group Meeting in Houston, Genentech/Roche announced the US and Canadian locations for their Natural History Study. This study does not involve drug treatments. It will monitor people with early manifest HD by testing their symptoms and measuring their mutant huntingtin levels over time. It will last for 16 months and includes an initial screening, 4 clinic visits with lumbar punctures and other assessments (at baseline and at months 3, 9, and 15), and 2 phone check-ups (at months 6 and 12). Around 100 people age 25-65 will be recruited. The 7 US study locations will be:
- Columbia Health Sciences/NYS Psychiatric Institute (NY)
- Georgetown University (DC)
- Hereditary Neurological Disease Center (Kansas)
- Johns Hopkins University (MD)
- Rocky Mountain Movement Disorders Clinic (Colorado)
- University of California, Davis Medical Center
- University of Texas Health Science Center- Houston
Please note that each of these sites must obtain their own internal approvals before they formally start recruiting for this study. Not all of these sites are recruiting yet; specific information about this study will be available shortly at www.hdtrialfinder.org and at the government’s clinical trials website: https://clinicaltrials.gov/ct2/show/NCT03664804
As a reminder, HDSA does not control participation in this trial; recruitment is likely to take place through existing doctor/patient relationships. Genentech/Roche has also provided a Clinical Trial Information Support Line at 1-888-662-6728.
