New CIHR-funded Burden of Inherited Neuromuscular Disease (BIND) Study: Assessing the Indirect Socio-Economic Burden of Inherited Neuromuscular Diseases

Led by NMD4C steering committee member Dr. Jodi Warman Chardon, this project has been awarded $449,030 over a 3-year period. The project’s goal is to assess the social and economic burden of Canadians living with neuromuscular disorders by using web-based surveys to assess quality-of-life, healthcare resource use, work productivity, and effect on schooling and careers.

Please share this study opportunity with those affected by NMDs and their families within your network! More information about this project is available at https://omc.ohri.ca/BIND/.

BIND study poster; graphic of computer and scale in centre, NMD4C logo with MDC and CNDR, OHRI in top right and link to study below.

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2024 NMD4C basic research summer school. Photo of attendees on the right.

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NMD4C investigator Dr Reshma Amin receives funding from CIHR for a grant to develop a framework for real-world evidence for NMDs in Canada

NMD4C Investigator Dr. Reshma Amin Leads Successful CIHR Grant Application to Establish a Framework for Real-World Evidence for Canadian Neuromuscular Diseases

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Spinal muscular atrophy outcome measures training registration open for December 3rd event.

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Canadian Neuromuscular Community of Practice

NMD4C Launch Survey to Assess Familiarity and Experience in Outcome Measures in NMDs

As we anticipate novel treatments for other neuromuscular conditions, we would like to understand your familiarity and experience with the outcome measures in clinical trials underway or for treatments for NMDs approved in other jurisdictions through a short survey.