Project title: The perspective of people who have recessive ataxia in assessing the impact of the disease: development of a self-reported assessment tool
Responsible doctoral student: Marjolaine Tremblay, SW, Ph.D.(c)
Supervision: Cynthia Gagnon, OT, Ph.D; Bernard Brais, MD, Ph.D.
You are invited to participate in a research project to develop a questionnaire to assess the manifestations and impacts of recessive ataxia in the daily lives of those affected.
The questionnaire that we are developing could be used to learn more about the disease, which could help improve the services offered to you. Once the questionnaire is complete, your medical team could use it to assess your situation and the effects of interventions or treatments.
This questionnaire can also be used when new treatments are being tested in order to assess their effects.
You can participate if you have recessive ataxia (eg ARSACS, Beauce ataxia, Friedreich ataxia, etc.) and if you are 18 years of age and over. You have until January 17, 2022 to participate.
To participate, complete the survey at the following link: https://fr.surveymonkey.com/r/D52HR6K
If you have questions about the study, you can contact me at : firstname.lastname@example.org
Thank you for your participation!
Marjolaine Tremblay, MA., Ph.D (c)