The Neuromuscular Disease Network for Canada

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About

The Neuromuscular Disease Network for Canada (NMD4C) is the new pan-Canadian network that brings together the country’s leading clinical, scientific, technical, and patient expertise to improve care, research, and collaboration in neuromuscular disease.

Launched in January 2020 with funding from the Canadian Institutes of Health Research (CIHR) and Muscular Dystrophy Canada (MDC), NMD4C builds on existing national initiatives such as the Canadian Neuromuscular Disease Registry (CNDR), the Canadian Pediatric Neuromuscular Group (CPNG), and the former neuromuscular network CAN-NMD.

Mission, Vision, and Goals

The mission of NMD4C is to improve the care, research and treatment of NMDs for all Canadians. Its vision is to be a comprehensive, inclusive, open and enduring network through which Canadian stakeholders can share expertise and data, and collaborate on joint activities and research for the benefit of Canadian patients.

The network’s goals are to:

  • Formalize and sustain a network of NMD stakeholders united around a cohesive three-year work plan
  • Train and educate the next generation of NMD stakeholders (clinicians, scientists, and patient advocates)
  • Raise the standard of care for NMD and access to therapies across Canada
  • Strengthen biomedical and clinical infrastructure to build research capacity in Canada

New diagnostic methods and recent advances in translational research have dramatically improved diagnostic rates and increased opportunities for therapy development for NMDs, but their rarity and diversity make interdisciplinary collaboration and national and international networking essential to future progress. For such collaboration to be meaningful, patients and researchers must work together as partners to identify health problems and research gaps, set priorities and co-develop appropriate outputs that enable the best outcomes for Canadian patients in terms of diagnosis, clinical follow-up, clinical trials, therapy development and research priorities. This closely aligns with the ambitious objectives of the International Rare Diseases Research Consortium (IRDiRC) to provide a genetic diagnosis to all patients with a rare disease (RD) within 1 year of coming to medical attention and to develop 1,000 newly marketed RD drugs.

National and International Collaboration

For the best outcomes for patients, research and care for NMDs must have an international outlook. Our work is founded on strong partnerships with leading investigators, academic groups and networks, patient organizations and pharmaceutical and biotech industry partners worldwide.

While NMD4C is a new network, it builds on the strengths of existing Canadian networking activities including CAN-NMD, the Canadian Neuromuscular Disease Network; CPNG, the Canadian Pediatric Neuromuscular Group; CNDR, the Canadian Neuromuscular Disease Registry initiative; and MDC, Muscular Dystrophy Canada. NMD4C leverages institutional and national resources such as the Rare Diseases: Models and Mechanisms (RDMM) Network, Care4Rare Canada Consortium, and Maternal Infant Child and Youth Research Network (MICYRN) and contributes to them, and will be embedded in and partner with international efforts such as EURO-NMD, RD-Connect, EuroBioBank and TREAT-NMD in Europe.

Services for Industry

We welcome opportunities to work together with pharmaceutical industry partners to achieve the translation of preclinical research findings into clinical trials and treatments for patients. The clinical members of the network are leaders in the field nationally and internationally who have led numerous commercially sponsored and academic-led clinical trials. The network coordination office can support industry partners in finding Canadian trial sites and accessing patients through the CNDR.

Our network brings together clinicians, researchers, and people with neuromuscular disease across the country.