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Queen Square Centre for Neuromuscular Diseases

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SMA registry

Sponsor / Funder TREAT-NMD, Jennifer Trust for Spinal Muscular Atrophy
CI Professor Hanns Lochmüller
Sites Newcastle
More information

The UK SMA registry is for all patients living in the UK and Ireland who are affected by all types of Spinal Muscular Atrophy (SMA).

Primary objective

  • to encourage genetically diagnosed SMA patients to register so that
  • they may be considered for relevant clinical trial
  • they receive up to date information about treatment
  • to provide the research community with an understanding of disease prevalence

SMA patients, or the parents/guardians of children with SMA, can register themselves online.

The registry was set up in 2008 as a collaboration between TREAT-NMD and the Jennifer Trust for Spinal Muscular Atrophy.

It is part of the TREAT-NMD Global SMA Registry. The Jennifer Trust has been supporting the registry since 2012.