Scotland leads the way: Newborn screening for SMA starts today

23 March 2026

From today, Monday 23 March 2026, all babies in Scotland who have the NHS newborn blood spot test will be offered screening for spinal muscular atrophy (SMA) in addition to the existing ten conditions.

These plans were first announced by the Scottish Government in September, and Scotland is the first country in the UK to begin national screening for SMA. In Scotland, approximately three babies every year are born with SMA, and an early diagnosis can mean the difference between being able to walk or not, and even their chances of survival.

How does the screening programme work?

Every baby in the UK is offered a newborn blood spot test (formerly called the heel prick test) to check for ten rare but serious conditions, including cystic fibrosis, sickle cell disease, and inherited metabolic diseases. The test is done around five days after birth so that conditions can be found early and treatment started as soon as possible. Until now, no muscle wasting condition has been included in newborn screening.

Based on learnings from other countries who already screen for SMA at birth, we know that early treatment before symptoms appear is vital to minimise irreversible damage.

For the next 18-24 months, SMA is being added to the newborn screening programme in Scotland as part of an In-Service Evaluation (ISE). This Scottish ISE will look at how SMA screening works in a real-world NHS setting, collecting data and evidence so that it can be implemented permanently.

What if the screening is positive?

As with the other conditions screened-for in the newborn blood spot test, a positive sample would be referred to the relevant clinical service. In the case of SMA, this would be the paediatric neuromuscular service in Glasgow. Parents would then be contacted to arrange urgent clinical care, meaning that treatment could begin as quickly as possible.

Major step forward

This is a significant milestone, and we’re delighted that babies in Scotland will be screened from today. We know that newborn screening is the fastest and most effective route to a diagnosis of SMA, where early treatment is vital to minimising the impact of the condition and helping children grow up without complex needs.

Early diagnosis and treatment will not only improve the quality of life for babies and families affected by SMA, but it will also provide long-term NHS cost savings.

Scotland is leading the way and it’s a significant and positive step that they are starting newborn screening for SMA. However, this life-changing development should not depend on where you live. It’s crucial that other parts of the UK follow at the earliest opportunity and we will continue to campaign for this.