Muscular Dystrophy Canada Announces Launch of National Neuromuscular Disease Real-World eXperience Registry

OTTAWA, ON, Sept. 15, 2026 /CNW/ -- Muscular Dystrophy Canada is proud to announce the launch of the Neuromuscular Disease Real-World eXperience Registry (NMD-RWx). This national initiative is designed to reshape neuromuscular research, policy, and care by putting people with lived experience at the centre of data collection and decision-making.

Developed with and for people living with neuromuscular disorders, their families, and caregivers, the "For Us By Us" NMD-RWx registry responds to a long-standing gap in Canada: the lack of comprehensive, patient-informed, Canadian-specific data to guide research priorities, access to treatment, clinical trials, and standards of care. There is currently no other national, patient-powered registry in Canada that is open to people across the broad spectrum of neuromuscular disorders. It is intended to add context, amplify patient voice, and improve coordination across research and care efforts, rather than replace existing data sources.

"Today marks an important step forward for the neuromuscular community in Canada," said Stacey Lintern, CEO of Muscular Dystrophy Canada. "For too long, critical decisions about research, access, and care have been made without comprehensive Canadian data that reflects lived experience. The NMD-RWx changes that by bringing together meaningful insights from individuals and families, ensuring that their voices are not only heard, but embedded in the evidence that guides research, informs policy, and supports improvements across the healthcare system."

The NMD-RWx uses a simple, two-tier participation model:

• Tier 1 – National Headcount: The first tier is a simple national headcount of people living with neuromuscular disorders in Canada. It will help establish a clearer picture of how many people are affected, the neuromuscular disorders they live with and where they are located. Participants can be included in this national headcount without completing a detailed health questionnaire.
• Tier 2 – Annual Health Questionnaire: Participants may also choose to complete an annual questionnaire about their health, quality of life, symptoms, functioning, treatment experiences and access to care, equipment and supports. Repeating the questionnaire annually will allow changes in health, experiences and priorities to be followed over time.

With participant consent, the NMD-RWx securely collects patient-reported information and relevant health data to strengthen Canadian neuromuscular research. It also supports more equitable access to clinical trials, provides evidence to inform policy and advocacy, and demonstrates the real-world impact of neuromuscular disorders on individuals, families, and health systems.

The NMD-RWx is designed to capture what is often missing from traditional clinical or diagnosis-specific registries, including the day-to-day impact of living with a neuromuscular disorder, barriers to accessing treatments, therapies, and supports, and real-world outcomes that matter to patients. "For me, joining the registry is about making sure our day-to-day realities count," said Danielle Campo-McLeod, who lives with a neuromuscular disorder. "It's not just about my diagnosis--it's about fatigue, mental health, navigating the system, and planning for the future. Knowing that my experience can help improve care and access for others gives me hope."

The registry uses standardized, validated patient-reported measures to ensure high-quality, scientifically credible data that is comparable across neuromuscular conditions, regions, and over time. It also collects longitudinal real-world data, enabling changes in symptoms, functioning, treatment experiences, and priorities to be followed as disorder trajectories and care needs evolve. This type of data collection will generate cross-disorder insights that reveal shared burdens, inequities, and system-level gaps that diagnosis-specific or clinic-based registries often cannot capture.

The NMD-RWx has been built with strong privacy protections, ethical oversight, and informed patient consent at its core, ensuring participation is voluntary, transparent, and focused on advancing outcomes that matter most to the neuromuscular community. Register today to be part of the NMD-RWx – the first of its kind patient powered registry for neuromuscular disorders in Canada and help shape the future of research and care in Canada. Enrollment is open to individuals living with a neuromuscular disorder, as well as parents, caregivers, and family members.

Visit muscle.ca/research/nmd-rwx/ to create your secure account, provide consent, and join the national headcount. You may then choose whether to complete the more detailed Annual Health Questionnaire. Whether you participate in the first tier alone or contribute annually, every response helps build the evidence needed to strengthen research, improve access to treatments, and ensure lived experience guides the future of neuromuscular care in Canada.

About Muscular Dystrophy Canada

Muscular Dystrophy Canada's mission is to support Canadians affected by neuromuscular disorders by funding research into life-changing therapies and treatments; delivering customized supports for clients and their families; advocating for positive changes in public policies that affect our community; and building partnerships that will lead to tomorrow's groundbreaking discoveries. To learn more, visit muscle.ca or call 1-800-567-2873.

SOURCE Muscular Dystrophy Canada

Media Contact: Dr. Homira Osman, Vice President, Research, Public Policy and Programs, Muscular Dystrophy Canada, [email protected]