The Neuromuscular Disease Network for Canada


CIHR Grant Funding for BIND Study: Assessing the Indirect Socio-Economic Burden of Inherited Neuromuscular Diseases

The NMD4C is happy to share that a project application featuring many NMD4C members on Assessing the Indirect Socio-Economic Burden of Inherited Neuromuscular Diseases has been awarded a Canadian Institute of Health Research (CIHR) research grant in their recent round of funding decisions!


BIND Study: Assessing the Indirect Socio-Economic Burden of Inherited Neuromuscular Diseases


Led by NMD4C steering committee member Dr. Jodi Warman Chardon, this project has been awarded $449,030 over a 3-year period, and includes NMD4C investigator Dr. Lawrence Korngut, steering committee member Stacey Lintern, and lead investigator Dr. Hanns Lochmüller as principal investigators on the grant alongside Dr. Kednapa Thavornas. Grant collaborators include NMD4C investigators Drs. Cynthia Gagnon, Hugh McMillan, Kathy Selby, Homira Osman, Daria Wojtal, and NMD4C early-career member Dr. Gerald Pfeffer.


The project’s goal is to assess the social and economic burden of Canadians living with genetic neuromuscular diseases (NMDs) by using web-based surveys to assess quality-of-life, healthcare resource use, work productivity, and effect on schooling and careers. The project team consists of Canadian experts in genetic NMDs, health economics and importantly, patient partners. The project consists of two major aims:


Aim 1: Estimate social and economic impact focused on the indirect costs and social burden of patients living with inherited diseases and caregivers. Individuals with genetic NMD and their caregivers will be invited through the National Muscular Dystrophy Canada advocacy group to complete a cross-sectional survey that aims to measure patient characteristics, treatment, disease burden, direct and indirect healthcare costs, and impact on work and school. We will also compare these indirect costs with those associated with common diseases (including Diabetes, COPD). 


Aim 2: Determine the relationship between disease management and the social and economic burden of genetic NMDs. The group will use statistical analysis to assess how patient characteristics and disease management are associated with health-related quality of life and economic costs of genetic NMD. By assembling one of the largest cohorts of patients with genetic disorders in Canada, the results of this study will allow patient organizations and government to make informed decisions, influencing policy in health and health system planning to better support patients with genetic NMDs.


The grant summary can be found on the CIHR funding decisions page here!


The NMD4C are happy to see members obtaining positive funding decisions in a competitive application process, and would like to congratulate them on their success! The network is proud to have leading Canadian neuromuscular researchers as members and will continue the network’s work in supporting the neuromuscular research community in Canada.

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The NMD4C are excited to share that the network’s lead investigator Dr. Hanns Lochmüller is the recipient of Muscular Dystrophy Canada’s Dr. George Karpati Award for Researcher of the Year! This prestigious award is presented annually to an exemplary neuromuscular clinician or researcher who has made a significant contribution to neuromuscular research, or the advancement of care of people with neuromuscular disorders. 


Final Session of the Defeat Duchenne Canadian Conference Wrap-Up and Thank You

Thank you to everyone able to join us for the 2021 Defeat Duchenne Conference Series addressing Duchenne Muscular Dystrophy Standards of Care in Canada. Jesse’s Journey in partnership with NMD4C and MDC are so appreciative of all our speakers and conference chairs who dedicated their time and energy in developing the programs. We successfully generated insightful conversations and discussions on how we might address care gaps in Canada. We are now working towards publishing the proceedings from this conference series to help shape the future of care for your patients and our families living with Duchenne in Canada.


Share Your Events with the NMD4C

The NMD4C strives to provide opportunities for our members for continuing neuromuscular training, development of knowledge and skills, and collaborate with other neuromuscular stakeholders; If you or your organization are hosting a neuromuscular event, conference or webinar, we would like to help you share it with our neuromuscular members!

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2021 NMD4C Year in Review

The NMD4C wrapped up its 2nd Annual Investigator meeting on Monday, November 29th 2021. This virtual conference served as an opportunity for the network’s investigators to come together and discuss the progress made towards the network’s goals over the past 12 months, with the leaders of the seven working groups presenting the results of their work. With the calendar year wrapping up, it is the perfect opportunity to reflect on all the inspiring progress the NMD4C has made over the past year in pursuit of the network’s goals.


Session Three of Defeat Duchenne Canadian Conference Addressing Standards of Care in Canada to Take Place December 3rd and 4th

The NMD4C is proud to partner with Jesse’s Journey and Muscular Dystrophy Canada (MDC) in hosting the first national summit solely focused on DMD for health care providers across Canada, with the theme for this year’s event being ‘Addressing DMD Standards of Care in Canada.’ Don’t forget to register for the third and final session of the CPD-accredited Defeat Duchenne Canadian Conference, which will take place on the 3rd and 4th of December, 2021.

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November 29th Networking Event for all NMD4C Members

The NMD4C are excited to extend an invitation to our members to join us at a Networking Event on November 29th at 2:10pm. This event is open to all NMD4C members and is an opportunity to meet and network with fellow colleagues, early-career clinicians and researchers, NMD4C investigators and working group members, and to discuss all things neuromuscular!