Defeat Duchenne Canada is proud to announce the launch of the first Clinical Trial Finder Tool for Duchenne and Becker muscular dystrophy in Canada.
Duchenne and Becker muscular dystrophy are progressive neuromuscular disorders with no cure. Affecting approximately 1 in every 5,000 boys in Canada, both Becker and Duchenne are caused by mutations within the dystrophin gene, one of the largest genes in the body responsible for strengthening muscles and protecting them from injury.
When the organization first began its quest for a cure twenty-six years ago, there was very little research and no clinical trials. Since then, numerous organizations, like Defeat Duchenne Canada, have transformed the landscape by investing in the most promising science focused on prevention, improved treatments, and a better quality of life for individuals living with Duchenne and Becker.
“We have developed an innovative Clinical Trial Finder Tool for those living with Duchenne and Becker muscular dystrophy. The tool helps gather comprehensive information on existing and pending clinical trials in Canada and beyond, allowing our community to easily personalize and navigate the latest information to help make informed choices about their participation,” shares Nicola Worsfold, Vice-President of Research, Advocacy and Education at Defeat Duchenne Canada.
“Being involved in a clinical trial is not a decision that can be made lightly,” she continues. “While it offers the possibility of hope, it also involves many sacrifices from the whole family. We want to empower our community with accurate, up-to-date information to facilitate informed decision making with their health care team.”
Defeat Duchenne Canada has built a foundation of strong partnerships with leading scientists and industry partners to improve care for individuals living with Duchenne and Becker. When they heard the need from their community for more resources regarding clinical trials, the organization turned to Lumiio, a global digital health company specializing in real-world data collection services that drive health outcomes.
“We were thrilled to be able to work with Defeat Duchenne Canada in the development of a tool that helps close knowledge gaps around clinical trial opportunities,” said Josh Lounsberry, Chief Strategy Officer at Lumiio, “The needs of the Duchenne community align perfectly with Lumiio’s mission of accelerating health outcomes through data.”