NCT06978985Recruiting
Adult SMA Research and Clinical Hub
Adult SMA REACH: Development and Implementation of a Standardised Data Set and Data Collection Research Study in the UK Adult SMA Population
Source: ClinicalTrials.gov · Last updated 18 May 2025 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
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).
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 600 (estimated)
- First submitted
- 7 Apr 2025
- Start date
- 29 Jul 2022
- Primary completion date
- 30 Apr 2027
- Lead sponsor
- Newcastle-upon-Tyne Hospitals NHS Trust
- Diseases
- Spinal muscular atrophy
- NCT number
- NCT06978985
What you commit to
- Study type: Observational
- Planned participants: 600
- From 29 Jul 2022 to the primary completion date, 30 Apr 2027
- 18 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Age
- \<16 years of age
Other
- Non-5q SMA
- No genetic confirmation
- No signed informed consent or consent withdrawn
Who the study is looking for
- 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
Age in the registry: 16 years to - · Sex: All · Does not accept healthy volunteers
Sites (18)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| University Hospitals Birmingham NHS Foundation Trust Coordinator of this site? Confirm its status | Birmingham | United Kingdom | Recruiting |
| North Bristol NHS Trust Coordinator of this site? Confirm its status | Bristol | United Kingdom | Recruiting |
| Cambridge University Hospitals NHS Foundation Trust Coordinator of this site? Confirm its status | Cambridge | United Kingdom | Recruiting |
| Cardiff and Vale University Health Board Coordinator of this site? Confirm its status | Cardiff | United Kingdom | Recruiting |
| NHS Greater Glasgow and Clyde Coordinator of this site? Confirm its status | Glasgow | United Kingdom | Recruiting |
| Bradford Teaching Hospitals NHS Foundation Trust Coordinator of this site? Confirm its status | Leeds | United Kingdom | Recruiting |
| The Walton Centre NHS Foundation Trust Coordinator of this site? Confirm its status | Liverpool | United Kingdom | Recruiting |
| King's College Hospital NHS Foundation Trust Coordinator of this site? Confirm its status | London | United Kingdom | Recruiting |
| University College London Hospitals NHS Foundation Trust Coordinator of this site? Confirm its status | London | United Kingdom | Recruiting |
| St George's University NHS Foundation Trust Coordinator of this site? Confirm its status | London | United Kingdom | Recruiting |
| Newcastle-upon-Tyne Hospitals NHS Trust Coordinator of this site? Confirm its status | Newcastle upon Tyne | United Kingdom | Recruiting |
| Nottingham University Hospitals Trust Coordinator of this site? Confirm its status | Nottingham | United Kingdom | Recruiting |
| The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust Coordinator of this site? Confirm its status | Oswestry | United Kingdom | Recruiting |
| Oxford University Hospitals Trust Coordinator of this site? Confirm its status | Oxford | United Kingdom | Recruiting |
| The Northern Care Alliance NHS Foundation Trust Coordinator of this site? Confirm its status | Salford | United Kingdom | Recruiting |
| Sheffield Teaching Hospitals NHS Foundation Trust Coordinator of this site? Confirm its status | Sheffield | United Kingdom | Recruiting |
| University Hospital Southampton NHS Foundation Trust Coordinator of this site? Confirm its status | Southampton | United Kingdom | Recruiting |
| South West Wales Neuromuscular Service in Swansea Coordinator of this site? Confirm its status | Swansea | United Kingdom | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.