Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

Jesse’s Journey + Muscular Dystrophy Canada (MDC): Burden of Illness Study

Establishing the burden of illness for a rare disease, like Duchenne muscular dystrophy, is critical for Canada’s access to medicines.

Jesse’s Journey has partially funded a burden of illness study currently underway by Muscular Dystrophy Canada (MDC), and we need your support! Please see the details below and complete the online survey before Monday, July 6, 2020:

About the Study

You are invited to participate in a web-based online survey on the direct and indirect costs associated with living with or caring for someone with a neuromuscular disorder and impacts on quality of life. This is a research project being conducted by Muscular Dystrophy Canada.

The purpose of this survey is to collect individual – and caregiver – reported outcomes to better understand the burden of neuromuscular disorders on patients and their caregivers in Canada.

It should take approximately 1 hour to complete. If necessary, you can save and return to the survey at any time.

You can also email research@muscle.ca or call 1 800 567-2873 ext. 9037 to schedule a time to complete the questionnaire by phone.

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