Committees, Alliances & Regular Dialogue

Page last updated: 1st April 2022

We invest time and energy voicing the views of the SMA Community:

• SMA REACH Networks for children and adults – These clinical networks involve clinical neurologists and physiotherapists from all the specialist neuromuscular centres. They collate natural history and treatment related data that will provide critical evidence when NICE reviews whether it will recommend future provision of treatments currently funded via Managed Access Agreements. The networks also share practice, particularly around the roll out of the drug treatment programmes. Each patient group (SMAUK, Muscular Dystrophy UK and TreatSMA) has a representative on the steering group.
• UK SMA Patient Registry – The registry is part of the global Treat-NMD registries. It will be collecting Patient Reported Outcomes (PROMS) from people receiving treatment. This will be linked with the SMA REACH data providing further critical evidence when NICE reviews whether it will recommend future provision of treatments currently funded via Managed Access Agreements. We are a memebr of the steering group.
• Pharma companies – we have regular meetings to keep updated, reflect the experiences of the community and flag issues and concerns. These links are particualrly important durign any drug appraisals by regulatory authorities.
• Partnerships and Alliances – we work closely with Muscular Dystrophy UK on access to SMA treatments, as well as with many other alliances on broader issues.