CAN-NMD: World-class Clinical Care for Neuromuscular Diseases

Neuromuscular disease (NMD) represents a heterogeneous group of more than 150 genetic and acquired disorders, the majority of which cause disability and premature death through progressive muscle dysfunction and/or wasting. More than one million North Americans live with these debilitating diseases, posing a significant socioeconomic burden to patients, their families, and the healthcare system.

In 2014, through a network catalyst grant from CIHR IMHA and support from Muscular Dystrophy Canada, the Canadian Neuromuscular Disease (CAN-NMD) network was established. CAN-NMD aspires to create a sustainable national network consisting of all interested stakeholders (patients and their families, charitable organizations, decision makers, opinion leaders, pharmaceutical companies, clinicians and researchers) across neuromuscular disease that will contribute to the delivery of world-class clinical care, the enhancement of capacity for world-class clinical and basic science research, and the opportunity for world-class educational and training opportunities for clinicians, scientists and trainees.

Since its establishment, CAN-NMD has had three in-person meetings with sessions on clinical and research opportunities, knowledge translation, and panel discussions. A goal of these meetings was to obtain an understanding of stakeholder needs through needs assessment and environmental scan surveys. A key outcome of these efforts will be the creation of an asset map, linking neuromuscular clinicians and researchers across Canada. The asset map will be a searchable online portal that allows researchers, clinicians, and patient organizations to enter detailed information on the services and expertise that are available to the neuromuscular community. The second key outcome is the creation of the CAN-NMD Wiki, a searchable online repository of vetted information that will serve to disseminate the work of researchers, clinicians, and patient organizations to the Canadian community. To date, more than 150 individual stakeholders have been engaged as members of CAN-NMD. Next steps include further engagement of other stakeholders to facilitate the development of network projects. An important goal is to link centers of excellence in neuromuscular disease from across Canada. One such center is the University of Ottawa Center for Neuromuscular Disease (CNMD). The CNMD is one of the world's largest concentrations of researchers dedicated to the field of NMD, with more than 50 research teams (~200 scientists, clinicians, and highly qualified personnel (HQP)) working in the area of NMD.

CNMD Investigators have hosted some of the most high-profile international scientific conferences to be held recently in NMD, including the 20th Anniversary of the Discovery of the Gene for Duchenne Muscular Dystrophy in 2007 and the Ottawa International Conferences on Neuromuscular Biology, Disease and Therapy (2010, 2015, 2017). These conferences attract some of the best minds to Ontario to share innovation and initiate novel collaborations. These conferences also offer important opportunities for HQP to present their findings and to network. The 5th Ottawa International Conference on Neuromuscular Disease and Biology will be held October 17-19, 2019, in Ottawa, Ontario, Canada. Save the date and look out for more announcements.

Individuals interested in muscle research and health are encouraged to reach out to CAN-NMD to find out more about how to become engaged.

Date modified:

2018-07-18