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Clinical Trial Participation in Huntington Disease: Survey Now Open

The Huntington Society of Canada, The Ottawa Hospital, and Clinical Trials Ontario are currently conducting an online survey with Huntington Disease (HD) patients and family members about their attitudes towards health research and participation in clinical trials.

As you may know, development of new treatments for HD involves a lot of clinical research, often including large-scale clinical trials that involve the participation of hundreds or thousands of patients. Rates of participation in these important studies has been declining for years, and we are trying to understand the range of factors that people consider when deciding whether or not to participate.

We are conducting an online survey of HD patients and family members about this issue.

Given your experience with HD, we’d like to invite you to participate in this online survey.  This survey will ask questions about your knowledge of clinical trials, as well as what you think are the most important barriers and drivers to participation in clinical trials. We estimate that the survey will take approximately 15-20 minutes to complete.

Thank you for considering our request. These participant informed consent forms provide more details about the study:

If you are interested in participating, please click on the link below. The survey will remain open until April 18, 2020.

If you have any questions, please don’t hesitate to contact Dr. Jamie Brehaut at 613-737-8899, ext. 73820 or via email at  You can also contact the research coordinator, Kelly Carroll at 613-737-8899 ext. 73824 or via email at


Jamie C. Brehaut, PhD
Senior Scientist, Clinical Epidemiology Program, Ottawa Hospital Research Institute
Angèle Bénard R.S.W.
National Director of Family Services, Huntington Society of Canada
Susan Marlin
President and CEO, Clinical Trials Ontario


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