SMA REACH UK Patient Information
Recent discoveries and advances in SMA have led to the development of potential therapeutic treatments. To ensure that the UK is ready for clinical trials we require a robust clinical and research network to collect high quality longitudinal data on SMA. Part of SMA REACH UK is also to ensure that functional scales and outcome measures (used to measure the physical and medical impact/course of SMA) are clinically relevant and valid for clinical trials in the UK. By creating a robust national database and ensuring that we are using a standardised approach to the assessment of SMA we are working to improve the standards of care for people with SMA in the UK.
The SMA REACH UK database will be formed from information collected at routine Neuromuscular medical and physiotherapy appointments where the Doctor and Physiotherapist will collect and record specific information about your SMA from their assessments. If you are interested in learning more about this study and what it would involve please see the information leaflets below.
Please do not hesitate to contact the study team if you require any further information.
The SMA REACH UK database will be formed from information collected at routine Neuromuscular medical and physiotherapy appointments where the Doctor and Physiotherapist will collect and record specific information about your SMA from their assessments. If you are interested in learning more about this study and what it would involve please see the information leaflets below.
Please do not hesitate to contact the study team if you require any further information.
| 1. Information leaflet for parents/guardians |
| 2. Information leaflet 16 - 18 years |
| 3. Information leaflet 11 - 15 years |
| 4. Information leaflet 6 - 10 years |
SMA REACH UK & UK SMA Patient Registry
| SMA REACH UK & UK SMA Patient Registry |
| UK SMA Patient Registry Information Leaflet |