We are absolutely delighted to hear the news that NHS Scotland will be adding SMA to their newborn screening programme in an evaluative and research capacity with the aim of the first baby being tested in early 2026.
External funding will be used to help purchase specialist testing equipment for the Scottish Newborn Screening Laboratory in Glasgow, and with only one testing site in the country, this means that every baby born will be screened for SMA, approximately 45,000 each year (45,763 live births in 2024). With clinical pathways already established and disease modifying treatments approved, this means those babies born will be treated pre- symptomatically and can therefore, in many cases, follow normal developmental pathways.
The data generated over a 2-year period from Scottish Newborn Screening Laboratory will complement and help contribute to the UK In-service evaluation ultimately helping towards a positive UK NSC decision for SMA to be added to the bloodspot programme.
This is a hugely positive step forward with Scotland joining other countries around the world who already screen for SMA.
Cabinet Sectretary for Health and Social Care, Neil Gray 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. I would like to thank SMA UK and all the campaigners across Scotland who have worked so hard to highlight this issue as well as Novartis for their funding. 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.”
See formal response from the Scottish government here
Bernadette 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”
SMA UK CEO, Giles Lomax said, “Strong evidence from both the UK and abroad supports introducing newborn screening (NBS) for SMA because it gives children the best chance to grow and thrive without complex health care needs. Every baby in Scotland, around 45,000 each year, will be screened through the Glasgow laboratory so treatment can begin quickly using life-changing drugs already approved by NHS Scotland.
NBS is not only clinically effective but also the most cost-efficient approach, helping to avoid substantial long-term healthcare costs. According to the UK NSC, introducing newborn screening for SMA each year could:
- Prevent two babies from needing permanent ventilation
- Prevent around three early deaths
- Stop about 30 babies from being limited to a sitting position
- Enable roughly 37 babies to live a near-normal life
With the Scottish Newborn Screening Laboratory in Glasgow fully operational, every child in Scotland will have equal access to screening regardless of where they live.
We can’t thank everyone enough who has tirelessly campaigned for this to happen and would like to thank Novarits UK for all their support”
Mark Dearlove, Chair of the Board of Trustees SMA UK said “We are delighted that the Scottish Government has taken this decision and has recognised the evidence both from the UK and internationally is overwhelming to introduce Newborn screening for SMA. SMA UK continues to work collaboratively with partners, stakeholders and the NSC to ensure that Newborn screening will be added across all home nations as soon as possible”.
Find out more about newborn screening here
Quotes from our partners
Andy Fletcher – CEO at Muscular Dystrophy UK, welcomes the Scottish Government’s announcement.
We know that newborn screening is the fastest and most effective route to a diagnosis of Spinal Muscular Atrophy (SMA), where early treatment is vital to minimising the impact of the condition and helping children grow up without complex needs. This is a significant and positive step by the Scottish Government and we are delighted that babies in Scotland will be screened from next Spring. It is crucial that other parts of the UK follow at the earliest opportunity, to ensure new born screening for SMA is available everywhere. 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.
Dr Catherine McWilliam – Clinical Geneticist, NHS Tayside and Lead Clinician for the Scottish Muscle Network.
The Scottish Muscle Network (SMN) welcomes the announcement that newborn screening for SMA will be introduced in Scotland as part of an in-service evaluation. This is a hugely important step forward for families across Scotland. Identifying SMA at the earliest possible stage allows us to begin treatment quickly, gives children the best chance of a healthier future and reduce the impact of the condition on their families as well as preventing significant long term healthcare costs.
The SMN looks forward to supporting this initiative and working with healthcare professionals, patients, and their families to ensure its success.
Dr Martina Rodie – Chair, Rare Disease Implementation Board
‘The Scottish Government Rare Disease Implementation Board is delighted that in 2026 SMA will be added to the newborn screening programme in Scotland. We are so grateful to our members and many others who have worked tirelessly to progress this work. The screening will be offered to all babies in Scotland and will incorporate all principles of Scotland’s Health & Social Care Service Renewal Framework.’
Natalie Frankish – Head of Scotland and Public Affairs. Genetic Alliance UK
‘This is fantastic news for families in Scotland. The addition of SMA to the newborn screening program means that every baby will be screened as part of an in-service evaluation, allowing for presymptomatic diagnosis and early treatment. We are pleased to see the Scottish Government expand newborn screening, joining over 30 countries, including the United States and much of Europe, that have already implemented this vital screening program for spinal muscular atrophy.’
Anne-Marie Childs – Consultant Paediatric Neurologist in Leeds and SMA UK Trustee
“It is gratifying to see that the Scottish Government have listened to clinicians, families and neuro muscular networks and initiated a NBS programme for SMA in Scotland. This will allow Scottish families to access timely and effective treatment for this devastating disorder, which will prevent the deaths and significant disability that results from delayed ‘symptomatic’ diagnosis”
Professor Zosia Miedzybrodzka – Honorary Consultant Clinical Geneticist & Service Clinical Director- Genetics, NHS Grampian
“It’s super that Scottish babies will have the opportunity to be part a UK national evaluation of screening for this devastating condition. There are important questions that need answered before implementation of a UK screening programme, and this pilot will pave the way.”
Professor Tom Gillingwater – Professor of Anatomy & Head of Department at the University of Edinburgh and Chair of the SMA Europe Scientific Advisory Board
“The news that newborn screening for SMA will be implemented across Scotland is truly game changing. The evidence is overwhelming that treating SMA before disease onset maximises the benefits of therapies, but this is only possible when the condition is detected before symptom onset via screening programmes such as this. I offer my thanks and congratulations to all individuals and organisations that have worked tirelessly to make this become a reality.”
