NMD4C: The Neuromuscular Disease Network for Canada

The Spinal Muscular Atrophy (SMA) Motor Function Measures workshop organized by the NMD4C in collaboration with MDC took place in Montreal, Quebec on December 3rd, 2024 and was a resounding success. This workshop was established to harmonize assessment practices for the following SMA outcome measures across Canada:

• Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders
• Bayley’s Scale of Infant & Toddler Development
• Adapted Test of Neuromuscular Disorders
• Hammersmith Motor Functional Scale – Expanded
• Revised Upper Limb Module
• 6 Minute Walk Test
• Patient Reported Outcome Measures for SMA

The workshop complemented the interactive training session that took place earlier this year for French-speaking physiotherapists and occupational therapists in Quebec City. This initiative was created to deliver essential training to clinicians (physiotherapists and occupational therapists), ensuring a consistent approach to evaluating motor function in children and adults with SMA.

Content co-designed and co-developed by (L to R) Dr. Cam-Tu Émilie Nguyen, Sarah Turgeon-Desilets, Melissa Dermody, Angela Chiu, Cheryl Scholtes, Allison Banks & Dorothy Drost

Therapists from the following provinces were in attendance: Ontario, Quebec, Alberta, British Columbia, New Brunswick, Nova Scotia, Saskatchewan & Manitoba. Post-event surveys reinforced that the participants highly valued the opportunity to attend in-person training, to network with colleagues across Canada, engage in productive discussions on outcome measures for SMA and gain knowledge on establishing a clinic for the adult SMA population. The workshop also featured insights from a patient partner with lived experience – Catherine Boivin, who shared her experiences with the outcome measure assessments.

A report summarizing both the French and English workshops is currently in creation and will be available soon. The content from this SMA outcome measures workshop will be used to create an online interactive training resource to provide access to this cutting-edge training to a broader audience.

If you are interested in receiving training resources, or to learn more about our work on outcome measures, please contact NMD4C Outcome Measures and Natural History Coordinator Zainab Adamji to learn how we can work together.