Today marks a monumental milestone, one we are proud to celebrate, as Scotland introduces newborn screening for Spinal Muscular Atrophy (SMA). From 23 March 2026, every baby born in Scotland will be screened for SMA as part of the routine heel prick test.
This important step is supported by a two-year evaluation funded by the Scottish Government and Novartis. The programme will gather robust, real-world evidence on the effectiveness of early detection and treatment. These findings will play a crucial role in informing the UK National Screening Committee’s decision on whether SMA should be permanently included in the national newborn screening programme. In Scotland, an average of three to four babies are born with SMA each year.
With established clinical pathways in place and all three disease-modifying therapies approved for use in Scotland, the system is well-prepared to respond სწრაფly to positive cases. If screening indicates SMA, the newborn screening laboratory at the Queen Elizabeth University Hospital in Glasgow will notify a paediatrician immediately. Families will then be contacted to arrange a consultation within 48 hours. From initial screening to diagnosis and the start of treatment, the process is expected to take less than one week.
As is often said in the SMA community, “time is neurons.” Early, pre-symptomatic treatment offers children the best possible chance to achieve key developmental milestones and to follow typical developmental pathways.
Our CEO, Giles Lomax said
“We are delighted to see Scotland start screening for SMA as of today, This milestone represents an important step forward for the SMA community. With all three treatments now routinely available through NHS Scotland alongside newborn screening, the future for anyone diagnosed with SMA is very different compared to their peers who were diagnosed symptomatically.
These babies will now have the opportunity to grow up without life-long health care needs and the complexity and challenges of living with SMA.I would like to thank the Scottish Government, the numerous clinicians and the Scottish Muscle Network as well as Novartis for their on-going support to drive change.”
Health Secretary Neil Gray commented
“Scotland is the first country in the UK to commence the evaluation of SMA screening and I was pleased to hear more about its life-changing impact. SMA can have devastating implications for babies and their families and this investment demonstrates our commitment to early detection through our screening programme.
I thank SMA UK which has worked so hard to highlight this issue, Novartis for its funding, as well as campaigners and the families I have met today. By detecting SMA before symptoms develop, screening could allow earlier treatment which could be life changing and help secure the best possible care and support for babies and families.”
NHS Greater Glasgow and Clyde’s Consultant Clinical Scientist and Director of the screening laboratory Dr Sarah Smith said:
“The Scottish Newborn Screening Laboratory is very excited to offer this screen as part of the UK In Service Evaluation. We are working closely with the UK National Screening Committee and other UK laboratories to assess the screen in a real life setting. Our staff have worked tirelessly to begin screening as quickly as possible so we can start to understand the impact that earlier treatment may have on babies born with this condition.”
UK and Ireland Chief Medical Officer at Novartis Rob Hastings said:
“We are delighted that Scotland has become the first nation in the UK to introduce newborn screening for SMA, helping ensure families benefit from timely diagnosis. This programme marks a significant step forward in early detection and intervention, giving babies the chance to receive the care they need as soon as possible. Novartis is proud to support this initiative alongside the Scottish Government, helping ensure families benefit from timely diagnosis.
Early identification of SMA can make a meaningful difference to children and their families, and we are confident Scotland’s participation will provide the evidence needed to make SMA a long term screening programme.”
Scottish Director of Screening Dr Tasmin Sommerfield said:
“I am delighted that Scotland is following the advice of the UK National Screening Committee and commencing this in-service evaluation of SMA screening. I am grateful to all the staff involved in the Scottish newborn bloodspot screening programme for all their hard work in making this possible. It will allow babies with SMA to receive the best care and treatment as soon as possible.”
Background
- The Scottish Government provided funding of £95,000 towards the SMA pilot, with Novartis providing £435,400.
- The Scottish Newborn Screening Laboratory provides a national screening service with around 50,000 dried blood spot samples received from newborn babies each year and tested for nine conditions such as Cystic Fibrosis, Congenital Hypothyroidism and Sickle Cell Disorders.
