Spinal Muscular Atrophy and School Transitions (NCT07720518) | Clinical Trial Compass
Not Yet RecruitingNot Applicable
Spinal Muscular Atrophy and School Transitions
United Kingdom20 participantsStarted 2026-08-10
Plain-language summary
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.
Who can participate
Age range
25 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
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.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Completion of the questionnaire to explore the experiences of children and young people with SMA and their families regarding school transition and educational participation.
Timeframe: 1 month to complete the focus groups. 1 month to develop the questionnaire. 1 month to send questionnaires to 12 families and allow for the responses back.
Trial details
NCT IDNCT07720518
SponsorRobert Jones and Agnes Hunt Orthopaedic and District NHS Trust