Spinal Muscular Atrophy and School Transitions

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 Criteria: * 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 Criteria: * Not in education * Not able to comply with the consent process * Not cognitively able to complete the questionnaire.