The Neuromuscular Disease Network for Canada

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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 across Canada. NMD4C is a sustainable network of NMD stakeholders: clinicians and other healthcare professionals, researchers, and patient organizations. Participants share expertise and collaborate through joint research and knowledge translation opportunities.¬† The network’s membership base is inclusive and new members are invited to participate in all aspects of the work program.

Networks provide opportunities to share not only expertise but also the infrastructural resources that underpin much research work. Much clinical and basic science research in NMDs depends heavily on access to resources such as patient registries, biobanks and clinical trial coordination. Developing the resources requires significant investment of time and resources, and duplication of effort should be avoided. Further, they must be readily known and available to researchers across Canada. Thus, such resources are best embedded in a national networking and infrastructural effort where they can seek sustainability and are available for future research projects.

Outputs:

  • Memorandum of Understanding with MDC
  • External progress report for MDC and IMHA
  • Network Charter
  • Network Sustainability Plan
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Relevant publications

Read next...

Researcher wearing gloves arranging blood sample tubes in a rack

Biobanking

Leads: Bernard Brais, Rashmi Kothary Biobanks are organized collections of biomaterial samples available for research. In rare diseases like neuromuscular disease, the number of available...
Clinical trial

Clinical trial coordination resources

Leads: Craig Campbell, Jim Dowling Currently, NMD trial sites are approached by sponsors (pharmaceutical companies and their contract research organizations) individually, in an uncoordinated fashion....
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Patient registries

Leads: Craig Campbell, Lawrence Korngut Patient registries collect information about individuals who are affected by a particular condition and are a particularly important research and...
wheelchair

Clinical guidelines

Development, dissemination, and implementation of clinical guidelines (Leads: Cynthia Gagnon, Kathryn Selby, Maryam Oskoui, Reshma Amin, Homira Osman) Canadian neuromuscular clinicians and scientists have contributed...
training

Training and education

A key goal of NMD4C is to train and educate the next generation of NMD stakeholders. Genomics training (Leads: James Dowling, Jodi Warman Chardon) Canadian...