The Neuromuscular Disease Network for Canada

For Immediate Release: June 21, 2023 

Ottawa, ON – The Neuromuscular Disease Network for Canada (NMD4C) has received a network grant from the Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA), providing funding of $200 000 per year for five years – with matched funding from Muscular Dystrophy Canada (MDC) –  to strengthen the care, research and treatment of neuromuscular diseases (NMDs) for all Canadians. The new grant brings together an expanded group of clinicians, scientists and patient representatives under the leadership of Dr Hanns Lochmüller (Children’s Hospital of Eastern Ontario) and Dr Homira Osman (MDC).  

“Since 2020, NMD4C has made remarkable progress in uniting Canada’s neuromuscular community. In these rare diseases it’s crucial that we work together, and we’re delighted that we have grown to more than 500 members spanning multiple disciplines, sectors, and areas of expertise. The network has made tremendous strides in building capacity through training and education, providing leadership and advocacy to improve access to approved novel treatments, and strengthening research resources and infrastructure” explains Dr Hanns Lochmüller, Senior Scientist, CHEO Research Institute and Professor of Neurology, University of Ottawa. “But there’s still so much more to be done. New scientific challenges and opportunities mean that networking across Canada and the globe is even more important. This new funding will allow us to expand our supportive, collaborative, networked community of neuromuscular stakeholders, bringing together an unparalleled concentration of NMD expertise to provide a Canada-wide platform for communication, collaboration, and best-practice sharing. We’re very grateful to CIHR-IMHA and to MDC for the funding that allows us to continue our work. We have some really exciting plans for this next phase of the network, particularly for our young doctors and researchers, and we can’t wait to get started.”

Building on the NMD4C’s successful work over the past three years, this new grant will enable an ambitious new program of research, networking, and clinical transformation to address emerging challenges in the field of NMDs. With a total of 67 named co-investigators from across the country bringing in their wider teams of researchers, this is one of the largest networking projects in the rare disease field in Canada. Matching funds are being provided by Canada’s leading NMD advocacy organization and partner on the grant MDC, for a combined total amount of $400 000 per year of network funding. 

 “We greatly value our longstanding partnership with the CIHR, and are deeply thankful to our many partners, fire fighters, donors, volunteers and supporters who generously give so that we can fund the vital work of NMD4C,” said Dr Homira, Osman, Vice-President, Research and Public Policy, Muscular Dystrophy Canada. “In addition to offering matched funding, our role in the new grant will be to ensure evidence is translated into practices and policies that will make a tangible difference in the lives of Canadians affected by neuromuscular disorders. Aligned with our recently unveiled Breaking Down Barriers five-year strategic direction, we will partner closely with researchers, clinicians, and the neuromuscular community to enhance proactive and collaborative approaches focused on strengthening infrastructure, enhancing capacity, establishing centers of excellence, and facilitating the dissemination of research outcomes.” 

This new grant unites people with lived experience, knowledge users, clinicians, and researchers to execute a new research plan with the following objectives: 

Support preclinical researchers and strengthen cutting-edge basic research via open-science mechanisms to share protocols and expertise, and exchange visits to learn novel techniques. 

Increase clinical research capacity in Canada by developing research resources, upskilling and promoting trial sites to create a Canadian clinical trial network, harmonizing outcome measures and natural history research, and linking to international activities including patient registration. 

Improve NMD clinical care and access to treatment across Canada by developing a new NMD community of practice, performing research to address post-marketing challenges including health economics, access to therapies and real-world evidence, and training and educating NMD specialists (trainees, researchers and clinicians spanning all career levels, patient partners) and equipping them to apply emerging knowledge and tools. 

These objectives are supplemented by five cross-cutting network themes of early-career development, patient partnership, knowledge translation and impact assessment, equity, diversity, inclusion and indigeneity (EDII), and open science. 

The NMD4C together with MDC are grateful for the ongoing support from the members of the Canadian neuromuscular community, and are excited to work together on this new program to meet the emerging challenges across the neuromuscular field and to fulfil the NMD4C mission to improve the care, research and treatment of NMDs for all Canadians.

Click here to read the press release in French.

Contact

Dr Erin Beattie

NMD4C manager