Thanks to Muscular Dystrophy Canada’s (MDC) incredible supporters, when opportunities arise to improve the care, research and treatment of neuromuscular disorders (NMD) for Canadians, we’re able to act. Such was the case with the Neuromuscular Disease Network for Canada (NMD4C).
Launched in January 2020, with funding from MDC and the Canadian Institutes of Health Research (CIHR), NMD4C was created to provide a comprehensive, inclusive, open and enduring network through which Canadian stakeholders can share expertise and data, and collaborate on joint activities and research. In addition to helping fund the network, MDC also became an equal partner and helps support knowledge translation.
Three years later, MDC has worked with NMD4C to:
- introduce support for clinical and post-doctoral research fellows;
- provide up-to-date clinical and research education through monthly accredited webinars, and forums for dialogue and exchange;
- create a national competency standard that recognizes advanced neuromuscular training;
- develop an accredited and standardized Canadian neuromuscular fellowship curriculum;
- build a virtual Canadian neuromuscular disorder biobank catalogue;
- update the Canadian Neuromuscular Disease Registry by adding two new disease datasets;
- establish NMD clinical trials, as well as clinical trial capacity;
- and, launch ‘imPORTND’, the first patient-oriented training platform developed specifically for neuromuscular disease research.
“Being a patient partner enables me to have meaningful input into research, to increase its relevance to quality of life and ensure that among its measures are things that are important to patients,” said Corinne Kagan, Patient Research Partner and co-developer of the imPORTND training modules.
“As a partner and funder, MDC has ensured that Canadians affected by neuromuscular disorders remain at the forefront of NMD4C’s decision making, activities and outcomes. From investing in early career researchers and clinicians and developing a virtual biobank, to strengthening the clinical landscape, the goal has always been to positively influence the NMD healthcare experience in Canada and to build research capacity and knowledge about these rare disorders,” said Dr Homira Osman, Vice President of Research and Public Policy, Muscular Dystrophy Canada. “We (MDC) remain committed to the network, and to working together to raise the bar for clinical and research standards in Canada and build upon the momentum currently taking place in research.”
To learn more about NMD4C and how you can support or become involved, contact research@muscle.ca
