Collects information on adults with spinal muscular atrophy in the UK
Records how adults with spinal muscular atrophy fare on current treatments over time.
Plain-language title generated from the registry record
Registry title: Adult SMA Research and Clinical Hub
Key facts
- Where
- Birmingham, Bristol, Cambridge, Cardiff, Glasgow, Leeds, Liverpool, London, Newcastle upon Tyne, Nottingham, Oswestry, Oxford, Salford, Sheffield, Southampton, and Swansea, United KingdomSee the 18 sites
Where in United Kingdom
- University Hospitals Birmingham NHS Foundation TrustBirmingham, United KingdomTaking people
- North Bristol NHS TrustBristol, United KingdomTaking people
- Cambridge University Hospitals NHS Foundation TrustCambridge, United KingdomTaking people
- Cardiff and Vale University Health BoardCardiff, United KingdomTaking people
- NHS Greater Glasgow and ClydeGlasgow, United KingdomTaking people
- Bradford Teaching Hospitals NHS Foundation TrustLeeds, United KingdomTaking people
- The Walton Centre NHS Foundation TrustLiverpool, United KingdomTaking people
- King's College Hospital NHS Foundation TrustLondon, United KingdomTaking people
- St George's University NHS Foundation TrustLondon, United KingdomTaking people
- University College London Hospitals NHS Foundation TrustLondon, United KingdomTaking people
- Newcastle-upon-Tyne Hospitals NHS TrustNewcastle upon Tyne, United KingdomTaking people
- Nottingham University Hospitals TrustNottingham, United KingdomTaking people
- The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation TrustOswestry, United KingdomTaking people
- Oxford University Hospitals TrustOxford, United KingdomTaking people
- The Northern Care Alliance NHS Foundation TrustSalford, United KingdomTaking people
- Sheffield Teaching Hospitals NHS Foundation TrustSheffield, United KingdomTaking people
- University Hospital Southampton NHS Foundation TrustSouthampton, United KingdomTaking people
- South West Wales Neuromuscular Service in SwanseaSwansea, United KingdomTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Newcastle-upon-Tyne Hospitals NHS Trust
- Trial code
- NCT06978985
- Record updated
- 18 May 2025
- Original description
Adult SMA REACH is a data collection study aiming to gain a better understanding of the impact of standards of care and new treatments on the natural history of Spinal Muscular Atrophy (SMA). This study is sponsored by The Newcastle upon Tyne Hospitals NHS Foundation Trust. Adult SMA REACH is funded by Biogen and Roche.Read full original descriptionShow less
Adult SMA REACH: Development and Implementation of a Standardised Data Set and Data Collection Research Study in the UK Adult SMA Population
Adult SMA REACH is a data collection study aiming to gain a better understanding of the impact of standards of care and new treatments on the natural history of Spinal Muscular Atrophy (SMA). This study is sponsored by The Newcastle upon Tyne Hospitals NHS Foundation Trust. Adult SMA REACH is funded by Biogen and Roche.
Currently, there are three drug treatments available for SMA in the UK: Zolgensma, Nusinersen and Risdiplam. Zolgensma is the only approved drug - Nusinersen and Risdiplam are currently available as part of Managed Access Agreements (MAA).
Inclusion: Age ≥16 years (when patients will begin the transition process to adulthood); Genetically confirmed diagnosis of 5q SMA; Signed informed consent to take part in the study.
Exclusion: <16 years of age; Non-5q SMA; No genetic confirmation; No signed informed consent or consent withdrawn.