UK SMA Patient Registry
This registry is for patients in the United Kingdom and Ireland with Spinal Muscular Atrophy (SMA).
- Learn more about the patient registry, the advantages of registering for you as a patient and the registration process.
- Contact us if you would like to receive the paper registration form to fill in.
Currently, there are 715 patients in this registry.
Co-sponsored by the patient organisation Spinal Muscular Atrophy UK.
'Established for over 30 years, we are a charity that supports, campaigns and advocates so that everyone in the SMA community can access the best care, services and treatments and benefit from continued research.'
Nusinersen (SpinrazaTM) Treatment Information Leaflets by SMA UK
November 2019
These leaflets aim to provide a summary for anyone affected by SMA Types 1, 2 or 3 who is considering the possibility of treatment with nusinersen for their child, or themselves. They are intended to be used in your discussions with you / your child's medical team. The leaflets can be found on SMA UK’s website here.