Screening could enable earlier treatment and improve life chances.
Screening of newborn babies to detect and treat a rare condition which causes progressive muscle wastage will begin early next year.
Scotland will become the first country in the UK to begin national screening for Spinal Muscular Atrophy (SMA) which affects movement, breathing and swallowing.
The Scottish Government and pharmaceutical company Novartis will fund a two-year
programme to gather evidence on the test’s effectiveness. On average three to four babies a year are born with SMA.All parents will be offered SMA screening for their newborn babies through the existing blood spot test at five days old.
Health Secretary 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.”
SMA UK charity CEO Giles Lomax said:
“We are absolutely delighted to hear the news that the 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 early 2026.
“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 National Health Service in Scotland will complement and help contribute to the UK In-service evaluation ultimately helping towards a positive UK NSC recommendation for SMA to be added to the bloodspot programme permanently.
“This is a hugely positive step forward with Scotland joining other countries around the world who already screen for SMA.”
Novartis UK and Ireland Chief Medical Officer Rob Hastings said:
"This is a landmark decision for families in Scotland, offering hope and an opportunity for early detection and access to care for children born with SMA.
"We welcome this progress and continue to support efforts to expand newborn screening across the UK, to ensure every child has the opportunity to be screened and treated for this rare and devastating condition.”
The tests will be analysed at the Scottish Newborn Screening Laboratory on the Queen Elizabeth University Hospital campus in Glasgow. Director and Consultant Clinical Scientist Dr Sarah Smith said:
"We are pleased to be supporting this important screening evaluation that will benefit babies and their families across Scotland by allowing babies with this condition to access treatment where it is appropriate more quickly, leading to better outcomes.
"We welcome these plans for SMA to be evaluated as part of our screening programme, allowing for evidence to be gathered on the test's effectiveness."
Background
The Scottish Government is providing funding of £95,000 towards the 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.
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