Petition Review the evidence and fund the addition of SMA to the Newborn Screening Test
We urge the UK Government to fund and help fast-track the process to add SMA to the NHS newborn heel-prick test. SMA is a rare genetic condition with devastating consequences if not treated early. Every baby should be screened at birth to allow early diagnosis and access to life-changing treatment.
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SMA was one of the leading genetic causes of infant mortality: up to 90% of untreated babies either died before age two or required permanent ventilation. It is now treatable, but treatment is most effective before symptoms appear. Early diagnosis can give babies the chance at a life without severe disability. Without screening, many babies are diagnosed too late. The damage already caused to their mobility, breathing and swallowing cannot be reversed. Scotland has committed to piloting SMA newborn screening this year. All babies should have the same chance. No child should suffer avoidable harm.
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Government responded
This response was given on 3 March 2026
The NHS is planning an in-service evaluation offering SMA screening to newborn babies in England. This will inform a decision on whether to extend the NHS newborn blood spot screening programme.
Read the response in full
The Government is grateful to campaigners who have made a powerful case for doing more on screening for spinal muscular atrophy (SMA). We are committed to seeing more children with SMA not just surviving but thriving.
Ministers and the NHS in all four nations of the United Kingdom are advised on all screening matters by the UK National Screening Committee (UK NSC), an independent scientific advisory committee which is made up of leading medical and screening experts. Where the Committee is confident that to offer screening provides more good than harm, they recommend a screening programme. Ministers in each of the four nations then make a decision on whether to accept the recommendation.
As recommended by the UK NSC, we are working at pace to roll out an In-Service Evaluation (ISE) in NHS screening services in England. An ISE is used to test proposed new screening programmes or changes to existing programmes. The process is used where a change in screening policy is justified by strong evidence, but important evidence gaps still remain that can only reasonably be filled by evaluation in a live NHS setting. The UK NSC uses ISEs to support its screening recommendation process and inform wider policy decisions about screening.
There are a number of areas where evidence gaps exist which an ISE of newborn screening for SMA will help to fill:
1. Feasibility
The ISE will test the optimum clinical pathway and test methodology within the context of a nationally delivered newborn blood spot programme in the NHS, ensuring the safe movement of babies through the screening pathway. This includes testing the logistics of administering a programme that is delivered consistently by multiple geographically separated and commissioned screening and genetics laboratories, treatment referral centres and IT systems, including the establishing of sustainable data collection systems for longer-term outcomes.
2. Acceptability
Work is required to understand the acceptability and experience of families of screened babies and the healthcare professionals involved in the screening pathway, for example with regard to the timing and mode of delivery of results. This will support future decision making on the optimal screening pathway.
3. Effectiveness
Screening for SMA aims to screen, diagnose and treat babies before they have symptoms. The ISE will evaluate the timescales that can be met by UK services at important stages of the screening pathway, such as for result availability, clinical referral and the start of any treatment. The performance of SMA tests in an NHS environment needs to be evaluated to ensure the screening programme demonstrates test characteristics, such as accuracy, reproducibility, resilience and operational utility.
As the drugs to treat the underlying biology of SMA are quite new, there is no evidence on their long-term clinical effectiveness, so evaluating this within the context of the NHS Newborn Blood Spot Screening Programme is important. Gaining more data on short-term outcomes will contribute evidence as to how clinically effective screening in the UK is.
As the long-term effectiveness of novel treatments is currently unknown, the ISE will allow for sustainable longer-term health outcome monitoring systems to be established. This will provide an essential capability for assessing the effectiveness of the screening programme. This includes metrics such as health states, quality of life, mortality and psychosocial outcomes.
4. Cost-effectiveness
The economic model commissioned by the UK NSC estimates that SMA screening in the UK is likely to be cost-saving or cost-effective. However, there are important uncertainties that could affect the accuracy and conclusions of the model. The ISE will therefore identify further information to allow both clinical and cost-effectiveness to be assessed, using real world UK data. This includes:
• costs involved in screening
• clinical effectiveness of presymptomatic and symptomatic treatment and the impact of diagnostic delay on presymptomatic babies
• long-term effectiveness of treatment
• how accurate the screening tests are
• which treatments patients receive and how effective these treatments are
• incidence of SMA in the UK
The research component of the ISE, which aims to understand the feasibility, acceptability, efficacy and cost-effectiveness of newborn blood spot screening for SMA, is being commissioned via the National Institute for Health and Care Research. A decision on funding is expected in spring 2026.
The planning and development of the ISE is being overseen by a partnership board that includes:
• screening experts from the four UK governments and from the NHS
• stakeholder organisations interested in newborn screening for SMA
• clinicians
• academics
• genomic experts
• patient and public voice representatives
SMA can have a devastating impact on individuals and families, and we are committed to working with all our stakeholders to progress this work in the UK.
Department of Health and Social Care