New CIHR-funded Burden of Inherited Neuromuscular Disease (BIND) Study: Assessing the Indirect Socio-Economic Burden of Inherited Neuromuscular Diseases

Led by NMD4C steering committee member Dr. Jodi Warman Chardon, this project has been awarded $449,030 over a 3-year period. The project’s goal is to assess the social and economic burden of Canadians living with neuromuscular disorders by using web-based surveys to assess quality-of-life, healthcare resource use, work productivity, and effect on schooling and careers.

Please share this study opportunity with those affected by NMDs and their families within your network! More information about this project is available at https://omc.ohri.ca/BIND/.

BIND study poster; graphic of computer and scale in centre, NMD4C logo with MDC and CNDR, OHRI in top right and link to study below.

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NMD4C logo with text reading 'Canadian neuromuscular clinical trials network', MDC and IMHA logos at bottom.

NMD4C Launch Canadian Neuromuscular Clinical Trial Network

We are thrilled to announce the launch of a Canadian neuromuscular clinical trial network (CTN) as a part of our clinical research work.

Event organizers and participants from SMA outcome measures training, March 2024 in Quebec.

Training Session for Physiotherapists and Occupational Therapists on Outcome Measures in Spinal muscular atrophy hosted by Quebec SMA Network

This past March 23, the Quebec SMA Network (Réseau québécois de l’amyotrophie spinale – RQAS) in collaboration with the NMD4C and Muscular Dystrophy Canada (MDC) hosted an interactive training session for French-speaking physiotherapists and occupational therapists on assessment measures and practices for Spinal muscular atrophy (SMA). This training gathered clinicians to train and discuss SMA standardized outcome measures and work through current problems/challenges, to improve how these measures often tied to drug reimbursement are conducted. 

MDC award $900 000 towards clinical and translational research projects in 2024.

MDC Announce Recipients of 2024 Neuromuscular Clinical and Translational Research Grants

Muscular Dystrophy Canada (MDC) recently announced the recipients of its annual Neuromuscular Research Grants competition. Through these grants, MDC is investing $900,000 into clinical and translational research projects.

SMA outcome measures training graphic

SMA Outcome Measures Training for Physiotherapists and Occupational Therapists

To support the development and training on validated NMD outcome measures we are pleased to provide opportunities for physiotherapists and occupational therapists to attend training sessions for outcome measures.

Congratulations to the 2024 early career award winners. Dr Mireille Khacho and Dr Jean-Philippe Leduc Gaudet.

Congratulations to the 2024 NMD4C Early Career Awards Recipients

We are excited to announce the recipients of the 2024 NMD4C Early Career Awards! This is the second year of our annual award program, celebrating excellence and contribution to the neuromuscular field from early career investigators across both clinical and basic science streams.

Pediatric Rare Disease Clinical Trials and Treatment Network - RareKids-CAN

MICYRN Secures $20 Million Grant from CIHR for a Pediatric Rare Disease Clinical Trials and Treatment Network

The NMD4C are excited to share that MICYRN’s success in securing a $20 million grant from CIHR Institute of Genetics to support the development and execution of RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network.