National Huntington Disease Clinical Trial Strategy
Background
Prior to 2012, Huntington disease (HD) clinics in Canada worked independently with no formal mechanism in place to connect clinicians and share best practices. Those affected by HD have expressed confusion with how clinical trials work and whether they should participate. In 2012, as part of a five-year strategic plan, HSC identified a critical need to develop a national HD clinical trial strategy complete with the structure and implementation steps required to ensure Canada is prepared for HD Clinical Trials. This was the first step in connecting researchers, scientists, and clinicians to work together and develop a comprehensive national strategy that will promote health research in Canada and ensure best practices are shared and knowledge transferred.
HD Clinical Trials Consortium
In 2014, the HD Clinical Trials Consortium was created to carve a new path for the research community and provide an opportunity for clinicians, the Huntington Society of Canada (HSC) and Canada’s Research-Based Pharmaceutical Companies (Rx&D) to partner in the outreach efforts to encourage participation in Huntington disease (HD) clinical trials.
The HD Clinical Trials Consortium is a conduit between researchers and individuals leading to the creation of a national HD Clinical Trial strategy. The consortium is open to Canadian Clinicians who are treating HD Participants.
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 they can get involved; and why their 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.
Mission Statement
To develop and implement a National HD Clinical Trial Strategy to ensure Canada is best prepared to support clinical trial research to treat and prevent Huntington disease.
Vision Statement
Be Brave Be Bold Be Ready: Clinical Trial Readiness Preparation Initiative has reverberated across Canada. Our HD families are eagerly enrolling in clinical trials aimed at slowing down, halting and even reversing the symptoms of Huntington disease. We have attracted the most promising clinical trials to Canada because of our cross-country network of certified sites, combining both research and clinical practice that utilize the highest ethics and standards to protect the health and safety of participants as well as the integrity and value of the research being undertaken. Our vision is that the approval process for HD clinical trials is streamlined, harmonized among multiple jurisdictions, and efficient. Our Canadian HD families are some of the first in the world to benefit from new treatments, as they help to slow or stop the progression of HD with HD clinical trials happening in Canada. A world free of HD is within our grasp.
For a complete copy of the strategy click here Be Brave Be Bold Be Ready _ HD Clinical Trial Strategy