On Saturday at the Huntington Study Group Meeting in Houston, Roche/Genentech 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 Huntington’s disease 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. Roche/Genentech has also provided a Clinical Trial Information Support Line at 1-888-662-6728.

If you have questions about the trial and eligibility, try checking out our FAQ document. 


Here’s The Deal with HD Research

HDSA’s new conversation series, Here’s the Deal, tackles important topics to help you navigate through your HD journey. It’s hosted by HDSA’s Jennifer Simpson, Senior Manager of Advocacy and Youth Programs. Episodes air on HDSA’s YouTube channel and include discussions about isolation, testing, relationships, family planning, and much more. This week, watch Jennifer discuss the ups and downs of HD research news, in conversation with HDSA’s Dr. Leora Fox.


The Brain Donation Project

Brain donation is an extremely valuable way to contribute to the future of HD science, and helps many people to find meaning and have their stories live on in what researchers will learn from their brains. HDSA partners with the Brain Donation Project to help increase the donated brain tissue available for research on Huntington’s disease. Kathy McKenzie, whose husband Michael died of Parkinson’s disease, shares her story with the Brain Donation Project, and National Geographic featured a myth-busting article about brain donation. More information is available at https://braindonorproject.org/ or by calling 513-393-7878.