Bi-weekly outpatient rehabilitation program for young children with Spinal Muscular Atrophy (SMA) treated with genetic-based therapies
Summary
Current clinical studies have found that active rehabilitation may improve physical function in children with SMA. However, no one knows for sure how active therapy may add to the benefits of genetic based therapies alone. We hope to determine if our outpatient rehabilitation program will improve physical function in children with SMA treated with genetic based therapies.
Call to action
Have you been diagnosed with Spinal Muscular Atrophy? Have you received genetic-based therapies?
Who can participate
Anyone 6 months to less than 6 years old with a diagnosis of Spinal Muscular Atrophy who has received genetic based therapy who is able to attend in-person therapy sessions with appropriate respiratory equipment (if needed) are eligible to participate. Participants must live in Ontario.
Funding agency
AFP Innovation Fund
What's involved
At the beginning of the study, participants will complete a demographics and quality-of-life survey before starting the therapy sessions.
The first visit is an in-person baseline assessment with the physiotherapist (90 minutes) and occupational therapist (90 minutes).
For the next 12 weeks, participants will complete two weekly in-person therapy sessions, one 45-minute physiotherapy session and one 45-minute occupational therapy session.
At the last therapy session, participants will have another physiotherapy and occupational therapy assessment (90 minutes each). After a 12-week period of no therapy sessions, participants will complete an in-person follow-up assessment as well as surveys about the program.
Interested in participating
If you are interested in participating in this study or have additional questions, please contact the research team at neuromuscular.research@hollandbloorview.ca or 416-425-6220 ext. 6943 with your interest, and they will get back to you shortly. Contacting us does not obligate you or your child to participate in the study.
Recruitment is ongoing.
Additional information
Version 1 (06/07/2022), REB#: 0550
Bi-weekly outpatient rehabilitation intervention for young children with Spinal Muscular Atrophy treated with genetic based therapies: A feasibility study
Recruitment flyer: Bi-weekly outpatient rehabilitation intervention for young children with Spinal Muscular Atrophy treated with genetic based therapies: A feasibility study
