Exploring school moves for young people with spinal muscular atrophy and their families
Asks young people with spinal muscular atrophy and their families about school changes.
Plain-language title generated from the registry record
Registry title: Spinal Muscular Atrophy and School Transitions
Key facts
- Where
- Oswestry, United KingdomSee the site
Where in United Kingdom
- The Robert Jones & Agnes Hunt Orthopaedic HospitalOswestry, United KingdomNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Robert Jones and Agnes Hunt Orthopaedic and District NHS Trust
- Trial code
- NCT07720518
- Record updated
- 22 July 2026
- Original description
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.Read full original descriptionShow less
Exploring Educational Transitions in Children and Young People With Spinal Muscular Atrophy: A Qualitative Study of Patient and Family Experiences.
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.
Inclusion: 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.
Exclusion: Not in education; Not able to comply with the consent process; Not cognitively able to complete the questionnaire.