Not yet recruitingOBSERVATIONAL

Spinal Muscular Atrophy and School Transitions

This study wants to understand the experiences of children and young people with Spinal Muscular Atrophy (SMA) and their families as they move through different stages of school. It will use questionnaires to find out what helps or hinders them in their education. The main goals are to identify difficulties when changing schools, support families better, see how well schools include and support students with SMA, and understand how education, health, and other services work together. The information gathered will help create helpful guides to make school transitions smoother for young people with SMA, making sure they get the best opportunities to learn and grow.

At a glance

Status

Not yet recruiting

Sponsor

Robert Jones and Agnes Hunt Orthopaedic and District NHS Trust

Enrolment target

Start

10 Aug 2026

Estimated completion

28 Feb 2027

Spinal Muscular Atrophy

What is this study about?

This study is especially for children and young people who have Spinal Muscular Atrophy (SMA) and are currently in school, whether that's primary, secondary, or further education. The researchers want to learn about what it's like for young people with SMA and their families when they move from one school year to the next, or from one school to a different one. They also want to understand their daily experiences at school and if they feel fully included.

Moving between schools or stages of education can be tricky for anyone, but it can be even more so for young people with conditions like SMA. This study uses a simple questionnaire to ask about these experiences. The team wants to find out what challenges people face and what support they receive. They're also interested in how well different services – like hospitals, schools, and social care – talk to each other and work together to help young people with SMA.

The main aim is to gather real-life stories and information to help make things better in the future. By understanding the difficulties and successes, the researchers hope to create practical tips and guidance. This guidance would be designed to help other families and young people with SMA have a smoother experience when changing schools, ensuring they get the best possible education and feel supported every step of the way.

Key takeaways

Aims to understand school experiences for young people with SMA.
Uses an online questionnaire; no clinic visits or medicines.
Open to those with SMA (types 1, 2, or 3) up to age 25, who are in education.
Hopes to create better guidance for school transitions for SMA families.
Your experiences can help future generations.
Participation is voluntary and you can withdraw at any time.

Who may be eligible?

This study is looking for young people up to the age of 25 who have a genetic diagnosis of Spinal Muscular Atrophy (types 1, 2, or 3). You need to be currently going to school or college (this includes primary school, secondary school, or further education like a college course).

To take part, you'll also need to have access to the internet, either on a smartphone, tablet, or computer, as the study involves completing an online questionnaire.

You won't be able to join if you're not currently in education, or if you're unable to understand and agree to take part in the study. Similarly, if you aren't able to complete a questionnaire, this study wouldn't be suitable for you.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do I (or my child) have a genetic diagnosis of SMA (type 1, 2, or 3)?
Am I (or is my child) currently attending primary school, secondary school, or further education?
Do I (or my child) have access to the internet on a smartphone, tablet, or computer?
Am I (or is my child) able to understand what's involved and complete an online questionnaire?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you will be asked to complete an online questionnaire. This questionnaire will ask about your experiences (or your child's experiences, if you are a parent) regarding school transitions and being part of school life with Spinal Muscular Atrophy. The study is qualitative, meaning it focuses on understanding experiences in depth rather than giving a medical treatment. There are no visits to a clinic, no medication involved, and no medical tests. The exact length of time it will take to complete the questionnaire will vary, but it's a one-off activity. You will not have ongoing follow-up after completing the questionnaire.

Potential risks and benefits

Taking part in this study may offer the benefit of sharing your experiences, which could help improve support for other young people with SMA in the future. There are no direct physical risks with completing a questionnaire. Some questions might make you think about challenging times, but you can choose not to answer any questions you're uncomfortable with. You are completely free to withdraw from the study at any time without giving a reason, and this won't affect your medical care.

Locations (1)

The Robert Jones & Agnes Hunt Orthopaedic Hospital
Verified postcode
Oswestry, United Kingdom

Common questions

What is Spinal Muscular Atrophy (SMA)?

SMA is a condition that affects the nerves that control muscles, leading to muscle weakness.

Who can take part in this study?

Young people (up to age 25) with a genetically confirmed diagnosis of SMA (types 1, 2, or 3) who are currently in any form of education and have internet access.

What will I have to do if I join?

You will fill out an online questionnaire about your experiences with school and SMA.

Are there any medical treatments involved?

No, this study is about collecting information on experiences; it doesn't involve any medical treatments or tests.

How long will this take?

You will complete one online questionnaire. The time it takes will vary, but it's a single activity.

How to find out more

Julie Steen

julie.steen@nhs.net 01691 404418 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.