NMD4C: The Neuromuscular Disease Network for Canada

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.