New pan-Canadian neuromuscular network unites doctors, researchers and patients for better research and care
A new Canadian network for neuromuscular disease was launched today in Ottawa, the home of its coordination hub. NMD4C (NMD for Canada) received catalyst funding from the Canadian Institutes of Health Research and Muscular Dystrophy Canada to develop solutions that will enable healthcare professionals, researchers and patients to work together and share expertise.
The network brings together leading neuromuscular experts from across the country who will work with patient advocacy organizations including Muscular Dystrophy Canada, Jesse’s Journey and the Ottawa-Gatineau Myotonic Dystrophy Support Group on an ambitious three-year work program. The funds will help develop vital research infrastructure resources including a unique “virtual” biobank that will enable researchers to locate the precious samples they need for their research, no matter where they are in the country, and will go towards further development of the Canadian Neuromuscular Disease Registry, a resource that enables patients to be registered for research into their condition and potential clinical trial opportunities. A new generation of specialist neuromuscular disease clinicians will receive training in best-practice care and in the cutting-edge diagnostic techniques such as genome-wide sequencing that are revolutionizing diagnosis of these genetic disorders, while young scientists will be encouraged to pursue a research career in neuromuscular disease through new placement opportunities that will enable them to see the patients their research benefits. Patients living with neuromuscular diseases will have opportunities to receive training in research and ethics methodology so that they are empowered to advocate for themselves in a research context and steer research policy towards their priorities, and will participate in updates to best-practice care guidelines that will be rolled out to all participating centres across the country.
NMD4C is coordinated from Ottawa by the CHEO Research Institute’s Dr Hanns Lochmüller, a world-renowned neuromuscular clinician-scientist who has led international networking initiatives in Europe and has a career-long commitment to collaborative science and data sharing.
Dr Lochmüller said: “We’re absolutely delighted to receive this catalyst funding for our NMD4C network. Because neuromuscular diseases are individually rare, but collectively affect many children and adults across Canada, working together, pooling expertise and developing shared infrastructure on a national level is essential if we want to make rapid progress towards giving all Canadian patients world-class care and developing new treatments. This is a fantastic opportunity for doctors, researchers and the patient community to come together to do just that, and we can’t wait to get started.”
The coordinating centre and other network sites will be recruiting staff to work on the project – see this news item for details.