The Dystonia Medical Research Foundation (DMRF) Canada collects survey data to better understand the experiences and needs of the dystonia community. All data requested is provided for informational and research purposes only. Access to the data will be granted on a view-only basis, with no ability to download, copy, or redistribute the material. Data access will be time-limited and subject to approval by DMRF Canada. All information must be used in accordance with DMRF’s privacy policies and applicable data protection regulations. Individuals eligible to contribute to the 2025 DMRF Canada Survey included people who experienced symptoms of dystonia, completed by themselves or their caregivers. All information provided was handled in a manner that safeguarded personal identity. Data used for analysis or sharing was de-identified, meaning all direct personal identifiers were removed. DMRF Canada served as the steward of the de-identified data collected and was responsible for overseeing its appropriate use in accordance with privacy policies and applicable regulations.
DMRF Canada Data Request Form: To put in a formal request to view our interactive view-only report, please click here
Thanks to everyone who took the time to complete the survey and share their voice! Your feedback plays a vital role in shaping a better future for dystonia patients in Canada.
This survey was made possible through the support of the medical student volunteers from the Community-Based Service-Learning (CBSL) program, part of the Health in Community (HC) team at the University of Toronto Temerty Faculty of Medicine. We thank students Afreen Ahmad and Erin Day for their contributions.
We gratefully acknowledge AbbVie Canada and Ipsen Canada for supporting this project and its dissemination to the dystonia community.
The 2025 Dystonia Survey was developed by the Dystonia Medical Research Foundation (DMRF) Canada. All intellectual property associated with this project, including survey questions and supporting materials, is the exclusive property of DMRF Canada and is protected under the Copyright Act of Canada. Reproduction, distribution, or adaptation of any part of the survey or its supporting materials is strictly prohibited without the prior written consent of DMRF Canada.
Questions regarding the use of intellectual property should be directed to DMRF Canada at 416-488-6974 or info@dystoniacanada.org.
Document Citation: This summary of findings should be cited in the following manner: DMRF Canada (2025). The 2025 Dystonia Canada Survey Key Findings.