Welcome to the
Adult SMA REACH website
The Objectives of Adult SMA REACH
The collection of long-term SMA data is vital to the continuous improvement of disease progression of SMA. The first step in Adult SMA REACH was to establish connections between the UK sites caring for adult SMA patients, now this is in place, our objectives are:
Create a clinical network to provide support on the delivery of standards of care, research and new therapies.
Establish a standardized care provision and service development
Correlate patient-entered and clinician-entered data for both paediatric and adults through connections with UK SMA Patient Registry and SMA REACH UK
Generate knowledge on the natural history and evolving phenotype of Adult SMA
Monitor patient safety accessing new treatments
Implement new functional scales and patient reported outcomes (PROMs).
Who is Involved in the Study? Where are our sites located?
Patients over the age of 16 years with 5q SMA are invited to participate through their local SMA clinic.
Our Adult SMA REACH team are based at the John Walton Muscular Dystrophy Research Centre (JWMDRC) in Newcastle. You can find more information about our team and their roles in Meet the Team.
Our 19 participating sites are located throughout the United Kingdom in England, Scotland, Northern Ireland and Wales. Please see Our Networks for a site map and more details on where to find participating sites near you.
Who We Work with
We work alongside SMA REACH UK and the UK SMA Patient Registry with the goal of systematising and harmonising the collection of paediatric and adult patient data, enabling the integrated and longitudinal analysis of clinical and patient-reported data. We also facilitate data collection transition from paediatric to adult care.
We also work closely with SMA patient organisations, to find out more please visit our Ongoing Research page. Our page has some further links to patient organisations, all of which have lots of useful information relating to SMA.
When did Adult SMA REACH begin?
Our study was approved in June 2021. It began during the Managed Access Agreement (MAA) of Risdiplam and Nusinersen. Please see For Patients for more study information.
