NMD4C: The Neuromuscular Disease Network for Canada

We are pleased to share a new publication from the NMD4C Clinical Trial Network led by Drs  Kerri Schellenberg, Homira Osman, Erin Beattie, Hanns Lochmüller, Craig Campbell, Jean Mah as well as Stacey Lintern, Maria Masnata, Rhiannon Hicks, Corinne Kagan and Ana Stosic. This work focuses on the implementation of a coordinated Canadian neuromuscular clinical trial network to enhance trial readiness, capacity, and access in rare disease research. 

Recognizing the unique challenges of conducting clinical trials in rare diseases, including small patient populations, geographic dispersion, and limited infrastructure, the study identified key barriers across the Canadian landscape. These included burdensome feasibility processes, limited workforce capacity, lack of centralized trial visibility, and fragmented coordination among stakeholders.

In response, the NMD4C Clinical Trial Network developed targeted strategies to address these gaps, including centralized feasibility triage, a national Community of Practice, mentorship, operational support, and alignment with patient and registry infrastructure. These efforts aim to strengthen coordination, support clinical trial personnel, and improve the overall delivery of neuromuscular trials across Canada.

This work presents a practical model for building a more coordinated and sustainable clinical trial ecosystem, with the potential to improve trial readiness and access for individuals living with rare neuromuscular diseases.

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