Spinal Muscular Atrophy and School Transitions

Starting soon

Conditions studied: Spinal Muscular Atrophy

In brief

A qualitative questionnaire-based study to explore the experiences of children and young people with Spinal Muscular Atrophy (SMA) and their families regarding school transition and educational participation. The study objectives: To identify barriers to successful educational transition. To advocate for patients and families during the transitional process. To explore experiences of inclusion, access and support within school settings. To understand the coordination between education, healthcare and support services. To inform the development of practical, patient-centred guidance to improve educational transitions for children and young people with SMA.

Key facts

Study ID

NCT07720518

Run by

Robert Jones and Agnes Hunt Orthopaedic and District NHS Trust

People needed

20

Starts

2026-08-10

Expected to finish

2027-02-28

Last updated by the study team

2026-07-22

Who can join

Age: any, up to 25. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Genetically confirmed diagnosis of Spinal Muscular Atrophy 1, 11 or 111
• In education, in either primary school, secondary school or further education
• Access to internet and either a smart phone, tablet or computer.

You may not qualify if…

• Not in education
• Not able to comply with the consent process
• Not cognitively able to complete the questionnaire.

Where it is running

• The Robert Jones & Agnes Hunt Orthopaedic Hospital — Oswestry, Shropshire, United Kingdom

Full record on ClinicalTrials.gov

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