---

Lead investigator

Collaborators & Co-Investigators

• Hernan Gonorazky, MD
• Aaron Izenberg, MD
• Laura McAdam, MD
• Robert Varadi, MD
• Craig Dale, PhD
• Jackie Chiang, MD
• Anu Tandon, MD
• James Dowling, MD, PhD
• Alberto Aleman, MD
• Jenny Shi, MD
• Tori Lacey
• Nouma Hammash, MSW, RSW
• Lauren Weinstock, PT
• Eugenia Law, RN
• Elisa Nigro, NP
• Anisha Manji, MSW
• Nisha Cithiravel, RRT
• Faiza Syed, RRT
• Tuyen Tran, RRT
• Erin Brennan, BSc

Research Sites & Affiliations

• The Hospital for Sick Children, Toronto, Ontario
• Sunnybrook Health Sciences Center, Toronto, Ontario
• Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario
• West Park Healthcare Center, University of Toronto, Toronto, Ontario

Budget: $100,000

Disorders: Spinal Muscular Atrophy

Research Areas: Enhance Care ,   Amplify Research & Accelerate Knowledge

Abstract: 

There are no programs for the transfer from pediatric to adult care for people living with Spinal Muscular Atrophy in Canada. Transition is known to be a time of worsening health due to gaps in clinical care. Therefore, this is an important area to improve upon for patients and families.

We want to learn about what it is like to be a person with SMA as they move from pediatric to adult care. We plan to do a 24-month study across 4 centers. We will talk to individuals with SMA and their caregivers who have already transitioned to adult care. We will also talk to individuals with SMA and their caregivers as they transfer to adult care at three time points: during pediatric care, after the joint transition visit and during adult care. We want to learn about the transition experience including what went well, what didn’t go well and how we can do better. We will also study the number of emergency room visits and hospital stays, quality of life, mood and stress levels during this time.

This study will be the first step towards developing specific programs across the country for people with SMA to help support them as they transfer from pediatric to adult care. What we learn can also be used to help develop programs for people with other neuromuscular disorders in Canada.

Impact: