The Neuromuscular Disease Network for Canada

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