In January 2020, NMD4C received three years of funding from the Canadian Institutes of Health Research (CIHR) and Muscular Dystrophy Canada (MDC) to achieve its mission of improving care and treatment of NMDs for all Canadians. This enables the NMD4C 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.
The NMD4C biobanking group seeks to unite the Canadian neuromuscular biobanking community, and provides information on current biobanks.
Clinical Trial Coordination
The NMD4C works to unite stakeholders in the Canadian neuromuscular clinical trial landscape including clinicians and trial sites, partner organizations, industry and people affected by NMDs.
Clinical Curriculum Development
The clinical curriculum development group works towards standardising a curriculum for the training of clinical fellows in neuromuscular medicine in Canada.
The NMD4C provide opportunities for EC members to encourage engagement in shaping the future of research and treatment surrounding NMDs.
Expert Patient Capacity Building
The EPCB group in collaboration with MDC and a group of patient-partners are working to establish expert patient capacity building in the Canadian neuromuscular community
The network’s KT group works to raise the standard of care and improve access to NMD therapies through the development, dissemination, and implementation of KT products (including clinical care guidelines).
Patient Registries Working Group Patient registries collect information about individuals who are affected by a particular condition and are a particularly important research and networking tool for rare diseases. The data collected may be used for a range of purposes, from research into specific features of the disease to clinical trial feasibility planning and recruitment.…
NMD4C Activities Overview
The infographic below shows how the network’s activities will help achieve better outcomes for NMD research and care.