$6 million Brain Canada grant awarded to McGill to develop virtual integrated patient platform
NMD4C are pleased to share that The Neuro has received a $6 million grant from Brain Canada to fund a new Open Science patient registry to share data with researchers around the world and let patients see how their data is used to develop new treatments for neurological disorders.
The Neuro’s Virtual Integrated Patient Platform (NeuroVIPs) will contain multi-modal data from thousands of patient partners stored across the institution’s various clinical and research platforms, including The Neuro’s Open Biobank. NeuroVIPs will create a digital link between these platforms, so that a patient’s phenotype, genetics, neuroimaging, and other data can be accessed by research teams in one centralized location.
Integrated neuromuscular biobank
We are excited to continue to work with The Neuro and C-BIG as the hub for our virtual neuromuscular biobank, and to apply their neuroinformatic architecture to the cataloging of Canadian neuromuscular tissue samples.
Learn more about the NeuroVIPs project
Read the full press releases from McGill University and Brain Canada to learn more!
Read next...
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.
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.