Research study – PRISM SMA (Priorities in Information Sharing and Management in Spinal Muscular Atrophy).
Research study – PRISM SMA (Priorities in Information Sharing and Management in Spinal Muscular Atrophy).
We are inviting you to take part in a UK-wide research study called PRISM SMA (Priorities in Information Sharing and Management in Spinal Muscular Atrophy).
Receiving a diagnosis of spinal muscular atrophy (SMA), and making decisions about treatment and care, can be an overwhelming experience. Families are often given a great deal of complex information in a short space of time, and we want to better understand what information is most helpful, what may be missing, and how this information can be shared more effectively.
What is the purpose of the study?
PRISM SMA is partnering with SMA UK, aiming to learn from the experiences of people living with SMA, parents, carers, and their families, as well as healthcare professionals caring for those with SMA. By sharing your views, you can help us identify what matters most at the time of diagnosis and during early management and help shape future guidance for healthcare professionals across the UK.
What does taking part involve?
Completing an online survey about your experiences of SMA care and decision-making
The survey is voluntary and can be completed at a time that suits you
At the end of the survey, you may choose to express interest in a follow-up 2 hour interview (this is entirely optional).
All responses are confidential, and you can withdraw at any time before submitting the survey.
Why take part?
Your experiences and insights are invaluable. What you share will contribute directly to improving how information, support, and care are provided to families affected by SMA in the future.
Further details about the study are included in the attached information, and the survey link is provided below. Please read the appropriate participant information sheet attached to this email before deciding on whether you would like to take part.
If you have any questions, please do not hesitate to contact the research team using the details provided in the study information.
Thank you very much for considering taking part and for helping us improve care for people living with SMA.
Closing date: 1st December 2026
PRISM Community information sheet
The PRISM SMA Research Team
Sheffield Children’s NHS Foundation Trust