Publications & Audits
Recent Adult SMA REACH work
- Adult SMA REACH: a UK clinical network and real-world data collection study – Adult SMA REACH
- Characterising SMA patients at the start of treatment – Adult SMA REACH
- Access to care for adults living with SMA in the UK – Dr Robert Muni-Lofra
- Minimum interval of functional assessments for monitoring efficacy – Dr Robert Muni-Lofra
- Review of activity levels and fall patterns – Katie Nevin
- Analysis of respiratory trajectories and DMT – Dr Robert Muni-Lofra
- Exercise Guidelines Working Group, SMA Care UK – Dr Robert Muni-Lofra and Pete Waldock
Our Research Impact
We are currently involved in 14 research projects.
Including papers/data requests collaborating with:
UK SMA Patient Registry
Safety and efficacy of Risdiplam – Dr Channa Hewamadduma
Safety and efficacy of Nusinersen – Prof Chiara Marini-Bettolo
Safety and efficacy of DMT in the UK – Prof Chiara Marini-Bettolo
International collaborations
Longitudinal evaluation of ATEND in adults – Dr Robert Muni-Lofra and Dr Tina Duong
Assessing 5-year motor outcomes in treated adult patients using international data. – Dr Robert Muni-Lofra, Prof Chiara Marini-Bettolo and Dr Tina Duong
SMA UK
Projected population – Dr Robert Muni-Lofra and A Rohwer
SMA patient journey – age of diagnosis and first DMT – Dr Tara Reeves
These publications represent the dedication and collaboration within our network to improve understanding and care for adults living with SMA
Collaborations
We welcome opportunities to work with national or international partners from academia, healthcare, and commercial sectors.
If your project involves collaboration, just mention this in your proposal.
How can you access Adult SMA REACH data?
You can request access to our data in 5 simple steps:
1
Complete a Data Request Form
Along with a detailed proposal outlining your intended use of the data
3
Steering Committee Review
Your request will be reviewed, with feedback or approval provided.
4
Data Access
Once approved, the data set will be shared with you.
5
Data release turn around time
1-4 months
Why?
Adult SMA REACH UK enables academic research and clinical audits, our adult database supports a wide range of studies.
Whether you’re from an academic institution, NHS, or industry. All requests undergo rigorous steering committee scrutiny to ensure data security and appropriate use.
