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.
Read next...
NMD4C 2024 Year in Review
This year in review outlines a collection of achievements from the network over the past year.
NMD4C and MDC Award Fellowship Funding in NMD Research and Medicine
Together the Neuromuscular Disease Network for Canada (NMD4C) and Muscular Dystrophy Canada (MDC) are excited to announce the 2025 recipients of our neuromuscular fellowship funding competition to award postdoctoral fellowships in neuromuscular disease (NMD) research and clinical fellowships in neuromuscular medicine and electromyography!
NMD4C Basic Science Trainee Committee Provides Leadership Opportunity for Next Generation of Neuromuscular Researchers
The newly-formed Basic Science Trainee Committee represents the interests of trainees within the network, offering an opportunity for professional growth for future leaders in neuromuscular research.
NMD4C and MDC Host Second SMA Outcome Measure Training Workshop for Physiotherapists and Occupational Therapists Across Canada
The Spinal Muscular Atrophy (SMA) Motor Function Measures workshop organized by the NMD4C in collaboration with MDC took place in Montreal, Quebec on December 3rd, 2024 and was a resounding success. This workshop was established to harmonize assessment practices for the following SMA outcome measures across Canada
NMD4C Launch New Multi-Disciplinary Care of Neuromuscular Diseases Education Curriculum
The NMD4C is excited to share a new training and education initiative from our education team! The Multi-Disciplinary Care of Neuromuscular Diseases lecture series is a new CPD-Accredited 24-topic webinar series designed as an advanced curriculum for the practicing clinical audience to learn fundamentals of multi-disciplinary care for patients across a range of neuromuscular conditions.
