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 R Muni-Lofra
- Minimum interval of functional assessments for monitoring efficacy – Dr R Muni-Lofra
- Review of activity levels and fall patterns – K Nevin
- Analysis of respiratory trajectories and DMT – Dr R Muni-Lofra
- Exercise Guidelines Working Group, SMA Care UK – Dr R Muni-Lofra and P 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 C Hewamadduma
- Safety and efficacy of Nusinersen – Dr C Marini-Bettolo
- Safety and efficacy of DMT in the UK – Dr C Marini-Bettolo
International collaborations
- Longitudinal evaluation of ATEND in adults – Dr R Muni-Lofra and Dr T Duong
- Assessing 5-year motor outcomes in treated adult patients using international data. – Dr R Muni-Lofra, Dr C Marini-Bettolo and Dr T Duong
SMA UK
- Projected population – Dr R Muni-Lofra and A Rohwer
- SMA patient journey – age of diagnosis and first DMT – Dr T 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.
