The UK National Screening Committee (UK NSC) does not currently recommend routine newborn screening for SMA across the UK.

Its previous recommendation dates from 2018, but the evidence base has changed substantially since then, including the availability of effective treatments. The UK NSC has therefore been developing an in-service evaluation (ISE) to assess the feasibility, effectiveness, acceptability and cost-effectiveness of newborn SMA screening.

The planned ISE is not a UK-wide screening programme. The UK NSC’s 2025 review says the ISE is intended to take place in English NHS services.

SMA UK’s work to achieve UK-wide SMA newborn screening

SMA UK is continuing to work with partners, policymakers and health services across the UK to ensure that every baby, regardless of where they are born, can benefit from newborn screening for SMA.

Following the significant progress made in Scotland and England, SMA UK is advocating for the introduction of screening in Wales and Northern Ireland, where there are currently no plans to include SMA in newborn screening programmes.

We will continue to make the case for action, highlighting the importance of early diagnosis and treatment and working with decision-makers in both nations to ensure that babies in Northern Ireland are not left behind.

Northern Ireland

In Northern Ireland, all newborn babies are offered routine bloodspot screening for nine serious conditions, but SMA is not currently included. While Scotland has introduced SMA newborn screening and England is now moving towards universal screening, there are currently no plans to introduce newborn screening for SMA in Northern Ireland.

Using 2024 birth-rate data, approximately 19,400 babies are born in Northern Ireland each year, meaning thousands of babies will continue to miss the opportunity for early SMA detection through newborn screening. This creates an increasingly stark difference in access to SMA screening depending on where a baby is born within the UK.

How you can help

We are asking for your support in calling for the introduction of newborn screening for spinal muscular atrophy (SMA) in Northern Ireland.

We would be grateful if you could help us spread the word and encourage people to write to their MLAs in support of newborn screening for SMA. We have created a simple tool to help people contact their representatives – click here to contact your MLA.