SMA REACH UK
  • Home
  • About the Study
    • Patient Information
    • Study Team
    • SMA-REACH national centres
    • Milestones
  • SMA Outcome Measures
    • Information for Professionals
  • Clinical Trials in SMA
  • News and Events
  • Contact Us
  • Useful links
  • About the Study
  • GDPR

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. 

1. Information leaflet for parents/guardians
File Size: 72 kb
File Type: pdf
Download File

2. Information leaflet 16 - 18 years
File Size: 158 kb
File Type: pdf
Download File

3. Information leaflet 11 - 15 years
File Size: 213 kb
File Type: pdf
Download File

4. Information leaflet 6 - 10 years
File Size: 217 kb
File Type: pdf
Download File

SMA REACH UK & UK SMA Patient Registry

SMA REACH UK & UK SMA Patient Registry
File Size: 361 kb
File Type: pdf
Download File

UK SMA Patient Registry Information Leaflet
File Size: 622 kb
File Type: pdf
Download File

Proudly powered by Weebly