We know that living with a neuromuscular disorder is expensive.

But, what is the full cost of living with a neuromuscular disorder in Canada? Muscular Dystrophy Canada is launching a new study exploring the social and economic impact on people with neuromuscular disorders (NMD), their families and society.

This comprehensive new study is a CIHR-funded project led by Dr. Jodi Warman-Chardon from the University of Ottawa and will collect information about the hidden and indirect costs of living with a neuromuscular disorder: how much time is spent in clinics and hospitals, away from work and school, and how much time and money is spent on travel, medications, rehabilitation, assistive devices and equipment, diagnostics, home therapies and other aspects of life with a NMD.

The findings will be used to shape Muscular Dystrophy Canada’s programming, inform our advocacy work, and help provide information to decision-makers about what families impacted by neuromuscular disorders need most. This is especially important now, as there are many life-changing therapies and treatments in clinical trials and in the pipeline.

But we can’t do this study without you! We encourage you to take this opportunity to shape the future of the neuromuscular community.

WHO SHOULD PARTICIPATE?


  • Anyone who is older than 2 years and has a clinical diagnosis of a neuromuscular disorder
  • Caregivers who are over the age of 18 and are caring for persons with a neuromuscular disorder. For example, a parent, spouse, partner or relative.

WHY SHOULD I PARTICIPATE?


This research will be used to help:

  • understand the challenges people with neuromuscular disorders face across Canada
  • make decisions on policy in health, education, and employment
  • manage and plan for care in the future
  • identify and support individuals and caregivers who need social and economic support
  • advocate for a greater investment in research for new therapies to treat and manage NMDs

The findings from this study will shape Muscular Dystrophy Canada’s programming, inform its advocacy work, and help educate decision-makers about what families impacted by neuromuscular disorders need most.

HOW LONG DOES IT TAKE TO COMPLETE THE SURVEY?


The time it takes to complete the survey will depend on the needs of the individual.

Individuals with neuromuscular disorders: Estimated 30-45 minutes

Caregivers: 20-30 minutes

DIDN’T MDC ALREADY CONDUCT AN ECONOMIC COST OF LIVING STUDY?


Yes, we did and we’re so pleased you remembered! The Economic Cost of Living Study focused on six neuromuscular disorders. We got valuable information from that study but it also clearly demonstrated that the social and economic impacts on the neuromuscular community are widespread. Through our BIND study, we’re further investigating those findings to determine the the indirect and hidden costs of living with a NMD.

If you have additional questions about the BIND Study, please contact our Research Hotline at research@muscle.ca or call 1-800-567-2873 ext. 1114.