SMA registry

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.