Biobanking Working Group Update

NMD4C is committed to strengthening the biobanking resources available to Canadian neuromuscular researchers. In rare diseases, the availability of biosamples is often limited, which hinders research into disease pathogenesis and mechanisms, and therapy development.

NMD4C is pleased to announce the addition of network collaborator Dr. Jason Karamchandani to the biobanking working group. Dr. Karamchandani is an Associate Professor in the Department of Pathology and a neuropathologist at the Montreal Neurological Institute and Hospital, who brings biobanking experience from his work with the Clinical Biospecimen Imaging and Genetic Repository (C-BIG). Dr. Karamchandani will lead the NMD4C in creating a virtual Canadian biobank, a central catalogue which will contain the neuromuscular samples available for research at the different biobanking sites across Canada.

The NMD4C biobanking group has identified eight biobanks (BDMB-MNM-MA, C-BIG, CHU Dumont Biobank, CIMS, CREATION, Neurobiobank, Pfeffer Lab Biobank) that collect and prepare a variety of samples covering a range of neuromuscular diseases. Each of these sites has provided information about what they collect, and the conditions and policies for researchers to access them. While the virtual biobank catalogue is under development, we have listed the biobanks with a summary of the NMDs covered, samples collected, associated sample data, material transfer agreements in place, context of how samples are used, and contact information on the NMD4C site, which you can access here.

If you know of any biobanks that we have missed or are involved in sample collection yourself and are interested in being listed on the NMD4C site and contributing to the virtual biobank catalogue, please let us know!

Logo_Biobank map

Read next...

06-2026 NMD4C Publication

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

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.

06-2026 NMD4C AFC Program Launch & September Workshop

Advancing AFC in Neuromuscular Medicine: Program Launch & September Workshop

The Royal College has approved National Training Standards for the AFC in Neuromuscular Medicine, creating a formal pathway to recognize enhanced competence with the DRCPSC credential. This designation establishes a national training standard, supports portable certification, and strengthens clinical capacity across Canada. PGME offices can now apply to offer accredited AFC programs, with a goal of five programs submitting applications by the end of 2026.