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Adult SMA Research and Clinical Hub
Sponsor: Newcastle-upon-Tyne Hospitals NHS Trust
Summary
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).
Official title: Adult SMA REACH: Development and Implementation of a Standardised Data Set and Data Collection Research Study in the UK Adult SMA Population
Key Details
Gender
All
Age Range
16 Years - Any
Study Type
OBSERVATIONAL
Enrollment
600
Start Date
2022-07-29
Completion Date
2027-04-30
Last Updated
2025-05-18
Healthy Volunteers
No
Conditions
Interventions
Risdiplam
Risdiplam
Nusinersen Injectable Product
Nusinersen
Locations (18)
University Hospitals Birmingham NHS Foundation Trust
Birmingham, United Kingdom
North Bristol NHS Trust
Bristol, United Kingdom
Cambridge University Hospitals NHS Foundation Trust
Cambridge, United Kingdom
Cardiff and Vale University Health Board
Cardiff, United Kingdom
NHS Greater Glasgow and Clyde
Glasgow, United Kingdom
Bradford Teaching Hospitals NHS Foundation Trust
Leeds, United Kingdom
The Walton Centre NHS Foundation Trust
Liverpool, United Kingdom
University College London Hospitals NHS Foundation Trust
London, United Kingdom
King's College Hospital NHS Foundation Trust
London, United Kingdom
St George's University NHS Foundation Trust
London, United Kingdom
Newcastle-upon-Tyne Hospitals NHS Trust
Newcastle upon Tyne, United Kingdom
Nottingham University Hospitals Trust
Nottingham, United Kingdom
The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust
Oswestry, United Kingdom
Oxford University Hospitals Trust
Oxford, United Kingdom
The Northern Care Alliance NHS Foundation Trust
Salford, United Kingdom
Sheffield Teaching Hospitals NHS Foundation Trust
Sheffield, United Kingdom
University Hospital Southampton NHS Foundation Trust
Southampton, United Kingdom
South West Wales Neuromuscular Service in Swansea
Swansea, United Kingdom