CNDR Officially Launches Canadian FSHD Dataset to Support Research and Therapy Readiness
The Canadian Neuromuscular Disease Registry (CNDR) is excited to announce the official launch of its new Facioscapulohumeral Muscular Dystrophy (FSHD) dataset this fall.
“This addition enhances our ability to directly support our CNDR sites in collecting high-quality, real-world data that drives FSHD research, expands knowledge, and supports future therapy readiness for individuals living with FSHD across Canada. We look forward to working closely with clinicians, researchers, and the FSHD community to deepen our understanding of the disease and strengthen coordination between research and clinical care nationwide.”
– Dr. Lisa Marie Langevin, Clinical Program Manager, Canadian Neuromuscular Disease Registry (CNDR)
Following previous updates on CNDR’s FSHD initiatives, NMD4C looks forward to seeing the continued impact of the new dataset on research and care for individuals living with FSHD.
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From June 8 to 10, 2026, we hosted the 3rd annual NMD4C Basic Research Summer School at the University of Ottawa. The program supported 28 neuromuscular research trainees (graduate students and postdoctoral fellows) from across Canada and focused on developing practical skills, strengthening core knowledge in neuromuscular research, and providing opportunities to present and discuss their work. Through a combination of tutorials, lectures, hands-on workshops in cutting-edge wet lab techniques, flash talks, and both structured and informal networking, participants engaged with faculty, exchanged ideas, and built connections across institutions and career stages.
New Publication from the NMD4C Clinical Trial Network Strengthens Trial Capacity in Canada
We are pleased to share a new publication from the NMD4C Clinical Trial Network led by Kerri Lynn Schellenberg, Homira Osman, Maria Masnata, Rhiannon Hicks, Corinne Kagan, Ana Stosic, Stacey Lintern, Erin Beattie, Drs. Hanns Lochmüller, Craig Campbell, and Jean K Mah. 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.
Canadian-Led Phase II Studies Advance Vamorolone Evidence in Duchenne Muscular Dystrophy
NMD4C investigators contributed to two phase II studies evaluating vamorolone in boys with Duchenne muscular dystrophy across early childhood and adolescence, demonstrating safety, favorable pharmacokinetics, and potential efficacy. Led by Dr. Jean Mah and conducted across Canadian clinical trial sites with national and industry collaborators, the findings supported Health Canada approval of vamorolone as the first treatment for DMD in Canada. Leaders from both the clinical and patient advocacy communities, including Defeat Duchenne Canada, highlighted the impact of collaboration among patients, families, clinicians, and researchers in advancing care and improving access to new therapies.