Information for Patients and Parents

SMA REACH UK collects data which is stored on an internet-based database for patients diagnosed with all types of SMA. The information collected about participating SMA patients includes their diagnosis and SMA management.  All information will be collected during routine clinic visits at your normal clinical centre.  

The purpose of this data is to help us understand more about SMA. This information will provide

• Details about the natural course of the condition
• The effects specific drug treatments
• Assist with improving the management of the condition nationally and internationally
• Help with the development of new SMA assessments tools
• Support the preparations for personalized national and international clinical trials specific  to SMA
• Improve and implement national standards of care through audits and reports

If you would like to get involved with this study or would like further information, please speak with your clinical team at your next clinic appointment. 

For a list of clinical site current taking participating in this study please follow the link below.