Brain Canada Invests in Expansion of National Neuromuscular Disease Registry to Advance Patient-Centered Research

CALGARY, AB, May 27, 2025 /CNW/ - Brain Canada is investing in transformative research platforms across the country to accelerate neuroscience discovery and improve outcomes for people living with brain-related conditions. As part of this national initiative, Dr. Lawrence Korngut at the University of Calgary has been awarded a 2024 Platform Support Grant (PSG) of $553,660 to expand the Canadian Neuromuscular Disease Registry (CNDR) into a multi-modal, open science platform.

"By expanding the CNDR, we're deepening our understanding of the lived experience of people with neuromuscular disorders. This evolution not only supports the development of better treatments but also ensures that patient voices are reflected in the data that drives discovery."

— Dr. Lawrence Korngut, University of Calgary 

"This audacious national effort reflects Brain Canada's commitment to a culture of open science grounded in transparency, collaboration, and increased access to shared resources, services, facilities and more."

— Dr. Viviane Poupon, President and CEO of Brain Canada. 

The Platform Support Grants program is a cornerstone of Brain Canada's strategy to strengthen the country's neuroscience and mental health research infrastructure. By supporting shared platforms,  including databases, biobanks, specialized equipment, and research facilities, the program enables collaboration, accelerates discovery, and expands access to cutting-edge tools to Canadian scientists. 

The ambitious task of studying the brain calls for integrated and collaborative research platforms. By funding these platforms, we are building a foundation that Canadian researchers will use to strengthen the future of all neuroscience and mental health research. Brain Canada is committed to fostering a culture of open science through transparency and collaboration. 

Brain Canada is contributing over $18 million in this year's PSG program through the Canada Brain Research Fund (CBRF), funded by Health Canada, as well as matching donations from sponsors for a total investment of $36.8 million. By enabling access to cutting-edge tools and specialized skills beyond the reach of individual researchers, the PSG program plays a vital role in strengthening the research landscape.  

Over the coming weeks, Brain Canada will unveil the full list of 14 research platforms selected to receive PSG funding. The total investment of $36.8 million represents a major step forward in Canada's ability to support cutting-edge brain research and improve outcomes for people living with brain-disorders. 

About The Platform:

Expanding CNDR as an Open Science, Multi-modal Data Platform: Dr. Lawrence Korngut, University of Calgary Total grant amount: $553,660.00 

The Canadian Neuromuscular Disease Registry (CNDR) supports research and tracks the effectiveness of treatments for neuromuscular disorders (NMDs), which are rare and complex conditions that affect nerves and muscles. By collecting data from over 40 clinics with more that 5,800 patients across Canada and collaborating with over 130 researchers, the CNDR has become an extensive network for standardized data collection and a valuable resource for advancing research in NMDs. Integrating patient-reported outcome measures into its various registries, including a new one for fascioscapulohumeral muscular dystrophy (FSHD), to capture severity and quality of life more frequently, will improve our understanding of the lived experience of people with NMDs and add depth to CNDR data across all diseases.

SOURCE Brain Canada