NMD4C Launch Survey to Assess Familiarity and Experience in Outcome Measures in NMDs

When treatments and therapies undergo approval processes in Canada or are proposed for reimbursement, they frequently rely on outcome measures that were used in the clinical trials. In the case of Spinal Muscular Atrophy (SMA), the reimbursement criteria mirrored motor function measures utilized in clinical trials and were not routinely used in clinical practice. To address this, the NMD4C has coordinated interactive training workshops for clinical evaluators (physiotherapists and occupational therapists) focused on SMA outcome measures. 

  

As we anticipate novel treatments for other neuromuscular conditions, we would like to understand your familiarity and experience with the outcome measures in clinical trials underway or for treatments for NMDs approved in other jurisdictions through a short survey. We would like to hear from neurologists, physiatrists, physiotherapists, occupational therapists, and neuromuscular nurses who conduct outcome measures as part of clinical trials and/or clinical practice. This information will help us in identifying and addressing any training needs or gaps through the development of workshops and resources. 

 

Complete the short survey here: https://redcap.link/NMD4Coutcomemeasuresurvey  

Canadian Neuromuscular Community of Practice

Read next...

BSTC logo

Call for Applications: Join the NMD4C Basic Science Trainee Committee (BSTC)

We are thrilled to announce that the Applications are now open to Join our Basic Science Trainee Committee (BSTC) The Neuromuscular Disease Network for Canada (NMD4C) is inviting applications for our Basic Science Trainee Committee (BSTC) from trainees who are interested in contributing to national initiatives that support the neuromuscular research, clinical, and trainee communities. We…

BSTC logo

BSTC Launches Standard Operating Procedures (SOPs)

We’re pleased to announce the launch of the BSTC Standard Operating Procedures (SOPs), now available through the NMD4C Resource Hub. These SOPs provide standardized guidance for laboratories, clinics, and research programs across Canada, supporting consistent, high-quality neuromuscular care and research. Explore the full SOP Library and other open-access resources designed to advance collaboration and strengthen practices nationwide.

Hope On The Horizon: Trials Treatments and Therapies for DMD, DM1 and MG

Hope on the Horizon: Trials, Treatments and Therapies for DMD, DM1 & MG

Nov 26-28, 2025 | Join us at Hope on the Horizon to learn more about the treatment and clinical trial landscape for Duchenne Muscular Dystrophy, Myotonic Dystrophy Type 1 and Myasthenia Gravis from key experts in the field!