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
- GENERATION HD1 will evaluate the efficacy and safety of RG6042 treatment (now known as tominersen), given once every two months (bi-monthly) or once every 4 months (16 weeks) over a period of 25 months (approx. two years).
- 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. This study is complete.
- FuRST 2.0 is an observational study to identify real or potential comprehension or usage problems with scale items, response options, instructions and disclaimer statement, which are all components of the FuRST 2.0 scale.
- HDClarity – an observational Study; Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington’s Disease
- Observational Natural History Study – an observational study aiming to further understand the role of mHTT in disease progression.
- Wave Precision-HD is a clinical trial testing a new drug that lowers the mutant Huntington’s disease protein, whilst leaving the normal huntingtin protein untouched. Wave Life Sciences in sponsoring this trial.
- SIGNAL is randomized, double-blind trial testing the safety, tolerability and effectiveness of a new drug in subjects at risk for or with early signs of Huntington disease Vaccinex is the sponsor of this trial.
- SHIELD HD is a natural history observational study, developed by Triplet Therapeutics. The study will include about 60 HD gene carriers – both pre-manifest and early manifest individuals – and is intended to inform future clinical trials.
Suggested resources for people with HD and families interested in HD research: