Actively Recruiting

Age: 16Years +
All Genders
NCT06978985

Adult SMA Research and Clinical Hub

Led by Newcastle-upon-Tyne Hospitals NHS Trust · Updated on 2025-05-18

600

Participants Needed

18

Research Sites

248 weeks

Total Duration

On this page

Sponsors

N

Newcastle-upon-Tyne Hospitals NHS Trust

Lead Sponsor

N

Newcastle University

Collaborating Sponsor

AI-Summary

What this Trial Is About

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).

CONDITIONS

Official Title

Adult SMA Research and Clinical Hub

Who Can Participate

Age: 16Years +
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Age 61 16 years
  • Genetically confirmed diagnosis of 5q SMA
  • Signed informed consent to take part in the study
Not Eligible

You will not qualify if you...

  • Non-5q SMA
  • No genetic confirmation
  • Under 16 years of age
  • No signed informed consent or consent withdrawn

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 18 locations

1

University Hospitals Birmingham NHS Foundation Trust

Birmingham, United Kingdom, B15 2GW

Actively Recruiting

2

North Bristol NHS Trust

Bristol, United Kingdom, BS10 5NB

Actively Recruiting

3

Cambridge University Hospitals NHS Foundation Trust

Cambridge, United Kingdom, CB2 0QQ

Actively Recruiting

4

Cardiff and Vale University Health Board

Cardiff, United Kingdom, CF14 4XW

Actively Recruiting

5

NHS Greater Glasgow and Clyde

Glasgow, United Kingdom, G12 0XH

Actively Recruiting

6

Bradford Teaching Hospitals NHS Foundation Trust

Leeds, United Kingdom, BD9 6RJ

Actively Recruiting

7

The Walton Centre NHS Foundation Trust

Liverpool, United Kingdom, L9 7LJ

Actively Recruiting

8

University College London Hospitals NHS Foundation Trust

London, United Kingdom, NW1 2BU

Actively Recruiting

9

King's College Hospital NHS Foundation Trust

London, United Kingdom, SE5 9RS

Actively Recruiting

10

St George's University NHS Foundation Trust

London, United Kingdom, SW17 0QT

Actively Recruiting

11

Newcastle-upon-Tyne Hospitals NHS Trust

Newcastle upon Tyne, United Kingdom, NE1 3BZ

Actively Recruiting

12

Nottingham University Hospitals Trust

Nottingham, United Kingdom, NG5 1PB

Actively Recruiting

13

The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust

Oswestry, United Kingdom, SY10 7AG

Actively Recruiting

14

Oxford University Hospitals Trust

Oxford, United Kingdom, OX3 9DU

Actively Recruiting

15

The Northern Care Alliance NHS Foundation Trust

Salford, United Kingdom, M6 8HD

Actively Recruiting

16

Sheffield Teaching Hospitals NHS Foundation Trust

Sheffield, United Kingdom, S10 2JF

Actively Recruiting

17

University Hospital Southampton NHS Foundation Trust

Southampton, United Kingdom, SO16 6YD

Actively Recruiting

18

South West Wales Neuromuscular Service in Swansea

Swansea, United Kingdom, SA6 6NL

Actively Recruiting

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Research Team

A

Adult SMA REACH Team

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

1

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Adult SMA Research and Clinical Hub | DecenTrialz