In June 2025, we announced that the National Institute for Health and Care Research (NIHR) had launched a research call in response to a recommendation from the UK National Screening Committee. The call seeks further evidence on “the feasibility, acceptability, effectiveness and cost-effectiveness of newborn screening for spinal muscular atrophy (SMA), should SMA be added to the routine newborn blood spot screening programme.” The findings from this research will help inform the decision on whether SMA screening should be introduced across the UK.
Working in partnership with University of Oxford, SMA REACH UK, the University of Sheffield, the University of Warwick and King’s College London, we are pleased to confirm that a proposal has now been submitted to the NIHR for review.
In line with NIHR timelines, we expect to hear whether the proposal has been accepted by April this year.
In practical terms, the proposal sets out a clear and detailed roadmap for how an in-service evaluation would be delivered in England, ensuring that as many babies as possible can be screened within the current capabilities and readiness of screening laboratories. The proposal sets out a phased rollout of SMA screening in England from January 2027, using seven existing newborn screening sites. By January 2028, these sites could screen 404,000 babies each year (72% of England).
The next step now lies with the NIHR committee, whose decision will determine whether this study can be approved and the in-service evaluation initiated as soon as possible.
Following on from the meeting with Wes Streeting on Monday 20th January, the health minister confirmed that he will look to “whether this evaluation can start sooner, and whether it can be expanded to involve all babies, rather than two thirds as currently planned and will be reporting back to the SMA community on this”
Commenting on the submission, CEO Giles Lomax said:
“This is a huge step forward in our mission to see SMA added to the newborn screening programme and aligns closely with in-service evaluation expectations. The consortium, led by Oxford University, brings together some of the UK’s leading institutions and experts in SMA. Their application to the NIHR clearly sets out how newborn screening for SMA could begin as early as January 2027. We hope the NIHR will accept this proposal so that a delivery plan can be established within NHS England, avoiding any unnecessary delays. In light of Wes Streeting’s public announcement we will be working closely to provide solutions to expand the ISE across England as well continuing our engagement with the Welsh Government and Northern Ireland Assembly.”
Laurent Servais Professor of Paediatric Neuromuscular Diseases at the MDUK Oxford Neuromuscular Centre said:
“After advocating and working hard with the entire community for the last 7 years- the submission of our proposal to the NIHRs ISE is a huge milestone. I wish to thank the team that has been working literally days and nights during the last weeks (including Christmas time) to achieve this. We were delighted to hear Wes Streeting’s declaration on NBS for SMA. We have made him aware that our team is ready to work ahead of the established agenda to make NBS a reality for SMA faster than anticipated. Currently, of the 600,000 babies born in England annually, 200,000 babies are excluded from the ISE, and we can coordinate stakeholders to ensure that no baby is disadvantaged by their postcode. We will work together not only to ensure that NBS is available for all babies in England in the very near future, but also to integrate this population in the important effort of evidence-generation.”
