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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 0-3 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.


Deadline


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.


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


Download recruitment flyer

Recruitment flyer: Bi-weekly outpatient rehabilitation intervention for young children with Spinal Muscular Atrophy treated with genetic based therapies: A feasibility study

Learn more about this study