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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
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  • No signed informed consent or consent withdrawn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

Full criteria on ClinicalTrials.gov

Sites (18)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
University Hospitals Birmingham NHS Foundation Trust
Coordinator of this site? Confirm its status
BirminghamUnited KingdomRecruiting
North Bristol NHS Trust
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BristolUnited KingdomRecruiting
Cambridge University Hospitals NHS Foundation Trust
Coordinator of this site? Confirm its status
CambridgeUnited KingdomRecruiting
Cardiff and Vale University Health Board
Coordinator of this site? Confirm its status
CardiffUnited KingdomRecruiting
NHS Greater Glasgow and Clyde
Coordinator of this site? Confirm its status
GlasgowUnited KingdomRecruiting
Bradford Teaching Hospitals NHS Foundation Trust
Coordinator of this site? Confirm its status
LeedsUnited KingdomRecruiting
The Walton Centre NHS Foundation Trust
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LiverpoolUnited KingdomRecruiting
King's College Hospital NHS Foundation Trust
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LondonUnited KingdomRecruiting
University College London Hospitals NHS Foundation Trust
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LondonUnited KingdomRecruiting
St George's University NHS Foundation Trust
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LondonUnited KingdomRecruiting
Newcastle-upon-Tyne Hospitals NHS Trust
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Newcastle upon TyneUnited KingdomRecruiting
Nottingham University Hospitals Trust
Coordinator of this site? Confirm its status
NottinghamUnited KingdomRecruiting
The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust
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OswestryUnited KingdomRecruiting
Oxford University Hospitals Trust
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OxfordUnited KingdomRecruiting
The Northern Care Alliance NHS Foundation Trust
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SalfordUnited KingdomRecruiting
Sheffield Teaching Hospitals NHS Foundation Trust
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SheffieldUnited KingdomRecruiting
University Hospital Southampton NHS Foundation Trust
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SouthamptonUnited KingdomRecruiting
South West Wales Neuromuscular Service in Swansea
Coordinator of this site? Confirm its status
SwanseaUnited KingdomRecruiting

This page is information, not medical advice. Discuss any trial with your doctor.