Information for patients
Advantages for patients
If you are a patient with SMA, there are good reasons for you to register here:
You will be regularly updated about treatment developments and their regulatory approval, research developments and SMA community news. Also, you will be updated about the Standards of Care guidelines - the recommended care and treatment for people with SMA compiled by international experts.
You will help researchers gain more knowledge about the prevalence and natural history of SMA within the UK.
It might be possible for your anonymised quality of life data to inform UK regulatory authorities in their review of SMA treatments.
You will be able to take part in international clinical trials more easily.