Adult SMA Research and Clinical Hub
Recruiting now
Conditions studied: Spinal Muscular Atrophy (SMA)
In brief
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).
Key facts
- Study ID
- NCT06978985
- Run by
- Newcastle-upon-Tyne Hospitals NHS Trust
- People needed
- 600
- Starts
- 2022-07-29
- Expected to finish
- 2027-04-30
- Last updated by the study team
- 2025-05-18
Who can join
Age: 16 and older. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- Non-5q SMA
- No genetic confirmation
- <16 years of age
- No signed informed consent or consent withdrawn
Where it is running
- North Bristol NHS Trust — Bristol, United Kingdom (enrolling)
- Cambridge University Hospitals NHS Foundation Trust — Cambridge, United Kingdom (enrolling)
- Cardiff and Vale University Health Board — Cardiff, United Kingdom (enrolling)
- NHS Greater Glasgow and Clyde — Glasgow, United Kingdom (enrolling)
- Bradford Teaching Hospitals NHS Foundation Trust — Leeds, United Kingdom (enrolling)
- The Walton Centre NHS Foundation Trust — Liverpool, United Kingdom (enrolling)
- University College London Hospitals NHS Foundation Trust — London, United Kingdom (enrolling)
- King's College Hospital NHS Foundation Trust — London, United Kingdom (enrolling)
- St George's University NHS Foundation Trust — London, United Kingdom (enrolling)
- Newcastle-upon-Tyne Hospitals NHS Trust — Newcastle upon Tyne, United Kingdom (enrolling)
- Nottingham University Hospitals Trust — Nottingham, United Kingdom (enrolling)
- The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust — Oswestry, United Kingdom (enrolling)
- Oxford University Hospitals Trust — Oxford, United Kingdom (enrolling)
- The Northern Care Alliance NHS Foundation Trust — Salford, United Kingdom (enrolling)
- Sheffield Teaching Hospitals NHS Foundation Trust — Sheffield, United Kingdom (enrolling)
- University Hospital Southampton NHS Foundation Trust — Southampton, United Kingdom (enrolling)
- South West Wales Neuromuscular Service in Swansea — Swansea, United Kingdom (enrolling)
- University Hospitals Birmingham NHS Foundation Trust — Birmingham, United Kingdom (enrolling)
Full record on ClinicalTrials.gov
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