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:
Exclusion Criteria:
julie.steen@nhs.net01691 404418 ext. 4418
Discussion regarding the development of a questionnaire
Exploring Lived Experiences of Families of Children With Spinal Muscular Atrophy(SMA) Type 1 Regarding Feeding and Communication
UK SMA Patient Registry
Diagnostic Journey, Patient Experience, and Disparities in the Treatment of Spinal Muscular Atrophy (SMA) in the MedStar Health System
Clinical Study of Spinal Muscular Atrophy
Exploring Bulbar Function, Speech And Communication Development in SMA Type 1
Improving Standards of Care and Translational Research in Spinal Muscular Atrophy (SMA)
Acceptability, Feasibility, Safety and Efficacy of a Optimized Rehabilitation Program for Treated Patients With Spinal Muscular Atrophy (SMA).
Long Term Trajectories of SMA Patients Receiving or Not Disease-modifying Treatments