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.