Defeat Duchenne Canada, La Force DMD and Muscular Dystrophy Canada are working together to conduct a joint national survey on the impact of Duchenne muscular dystrophy (DMD) on people living with DMD and their families.
The findings will be used to inform patient-group submissions about givinostat, a treatment currently under review by Health Canada, to Canada's Drug Agency (CDA-AMC) and Quebec's Institut national d'excellence en santé et en services sociaux.(INESSS). Responses from across Canada will be analyzed together, with Quebec responses also examined separately to describe the Quebec context.
CDA-AMC reviews new treatments and makes recommendations to provincial and territorial governments (with the exception of Quebec) about whether they should be publicly funded. In Quebec, INESSS conducts a separate review and makes its own recommendation to the Quebec government. This survey is an important opportunity to share your perspectives and ensure your experiences are reflected in the decision-making process.
