Newborn screening in Scotland
Newborn screening in Scotland
We are delighted to share the news that NHS Scotland will add Spinal Muscular Atrophy (SMA) to its newborn screening programme in an evaluative and research capacity, from the 23rd March 2026.
This marks a hugely positive step forward for babies and families across Scotland and brings the country in line with many others around the world that already screen for SMA at birth.
What This Means for Babies in Scotland
External funding has supported the purchase of specialist testing equipment for the Scottish Newborn Screening Laboratory in Glasgow. As Scotland has a single national screening laboratory, this means every baby born in Scotland will be screened for SMA, around 45,000 babies each year (45,763 live births in 2024).
With established clinical pathways and disease-modifying treatments already approved by NHS Scotland, babies identified through screening can receive treatment before symptoms develop. In many cases, this allows children with SMA to follow near-normal developmental pathways, dramatically improving long-term outcomes.
Kelly-Ann Woodland, from STV, has been speaking to parents Elaine and Clare who both have boys called Max aged 9 who have SMA about their diagnosis and Giles Lomax about treatment and newborn screening. Watch the short film here.
Building the Evidence for UK-Wide Screening
Data collected over the initial two-year evaluation period will support the wider UK in-service evaluation. This evidence will play a crucial role in helping the UK National Screening Committee (UK NSC) make a positive decision to add SMA to the national newborn bloodspot screening programme.
Voices from Scotland
Neil Gray MSP, Cabinet Secretary for Health and Social Care, said:
“This condition can have devastating impacts for babies and their families and this investment demonstrates our commitment to early detection through our screening programme.
By detecting SMA before symptoms develop, screening could allow earlier treatment which could lead to much better life outcomes. This investment will contribute towards building the case for making this test permanent and help secure the best possible care and support for babies and families.”
Bernadette, campaigner and parent, said:
“After campaigning with the Scottish Government last year with Nathanael, I am delighted to hear that SMA will be added to the newborn screening programme. This will lead to earlier treatment and better outcomes for countless families across Scotland.”
Why Newborn Screening for SMA Matters
Newborn screening for SMA is not only clinically effective, but also highly cost-efficient. According to the UK NSC, introducing SMA screening each year could:
- Prevent two babies from needing permanent ventilation
- Prevent around three early deaths
- Stop approximately 30 babies from being limited to a sitting position
- Enable around 37 babies to live a near-normal life
We are incredibly grateful to everyone who has tirelessly campaigned to make this happen, and we would like to extend our sincere thanks to Novartis UK for their continued support. This announcement represents real progress and real hope for babies born with SMA in Scotland.