The Huntington Society of Canada (HSC) plays a key role in bridging the relationship between researchers and individuals by educating Canadians on the importance of the clinical trial process, how to get involved and why participation is so crucial. The urgency lies in not only educating as many people as possible, including efforts in rural and culturally diverse communities, but also ensuring clinicians have sustainable mechanisms in place to support the process.
HSC is emerging as a leader in linking researchers and clinicians in order to continually prepare for future trials. Drugs being tested now have been specifically designed for Huntington disease (HD). This is a significant step forward. Managing HD will take the collective efforts of researchers, scientists, clinicians, the Huntington Society of Canada and HD families all have to work together. It is our best chance for success.
2015 was an important year for HD clinical trials. Participation in Enroll-HD will facilitate your involvement in clinical trials when they are available in your area. Enroll-HD is a platform that allows health-care professionals, scientists, and families affected by HD to work together towards a better understanding of HD and identify effective treatments. Their objective is to create the world’s largest database for clinical research on HD, eventually including information from as many as 20,000 people in 33 countries. Visit www.Enroll-HD.org to learn more and to find out the closest site for you to participate.
Clinical Trials Currently In Progress
- ENROLL-HD is a 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.
- HDClarity – an observational Study; Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington’s Disease
- Pride-HD (Pridopidine) may help with movement symptoms. A Teva sponsored trial.
- Legato-HD aims to calm down the immune system in HD. A Teva sponsored trial.
- IONIS-HTTRx is the first huntingtin-lowering potential treatment for HD. The drug will be injected into the spinal fluid to allow it to reach the brain, then tell the cells not to make the harmful huntingtin protein that causes HD. This is a world first for this method, which most HD researchers consider to be the most promising approach to treating HD.
Suggested resources for people with HD and families interested in HD research: