Real Patients, Real Results: The Dystonia Canada Survey Report


We're pleased to announce the results of the first ever Dystonia Canada Survey are now available.  Real Patients. Real Answers: The Dystonia Canada Report is available in print and online. You can see the online version here.

To order a copy in print, please email your request to:

The groundbreaking results will provide the DMRF Canada with a comprehensive evaluation of the experiences, fears, feelings and thoughts of Canadians living with dystonia, to help to develop a long-term strategy for better supporting this patient population.

This survey was the first of its kind in Canada. Close to 900 surveys were completed by dystonia patients. After removing responses from individuals from outside of Canada, as well as duplicates, we had over 600 responses from dystonia patients across Canada, collected over a four-month period. Responses were provided through an online survey that was promoted electronically and via social media, in the DMRF Canada Fall 2017 Newsletter, and via printed brochures that were distributed at movement disorder clinics across the county in both official languages.

Survey respondents came from Canadians across ten (10) provinces and the Yukon Territory; it represented all ages, both genders, and over twenty forms of dystonia.



Last update: Oct 2017