The Neuromuscular Disease Network for Canada

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Our Work

In January 2020, NMD4C received three years of funding from the Canadian Institutes of Health Research (CIHR) and Muscular Dystrophy Canada (MDC). This enables us to work on activities to improve care standards, train the next generation of NMD researchers and clinicians, and strengthen research infrastructure for better research and more treatments. Read more about our work plan below.

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Our work plan

NMD4C has developed a comprehensive three-year work plan covering network development, training and education, development of clinical guidelines and research resources and infrastructure.

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Network development

Bringing people together to achieve joint goals and share expertise is a crucial foundation for better research and care. NMD4C is a sustainable and open network of NMD stakeholders working together across Canada.

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Training and education

An extensive training, education and capacity-building program will train the next generation of neuromuscular healthcare professionals, researchers and patients in cutting-edge aspects of diagnosis, care, and therapy development.

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Patient registries

Patient registries enable research into many aspects of a disease. The Canadian Neuromuscular Disease Registry (CNDR) supports academic and industry-led research and will be further developed and extended through NMD4C activities.

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Biobanking

To support easy access to NMD biosamples by the researchers who need them, NMD4C will create a virtual Canadian NMD biobank, with a central catalogue linked to international initiatives such as EuroBioBank, and standardized SOPs, ethics guidance and data linkage tools.

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Clinical trial coordination resources

Better coordination of information and improved exchange between trial sites will increase trial capacity across Canada by ensuring that some sites do not become over-committed while others have underused capacity.

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Clinical guidelines

Practice guidelines are important tools to help guide clinical care and shared decision making and improve outcomes for Canadians living with NMDs. NMD4C will work to ensure guidelines are up to date and that they are implemented in all participating clinics.