All babies born in England will be offered testing for a rare genetic disorder from October 2026, following an Oxford University study.
Every newborn baby in England will be screened for spinal muscular atrophy (SMA), following the expansion of a pioneering University of Oxford-led pilot that introduced the country’s first routine test for the condition.
This expansion follows a pilot study led by Professor Laurent Servais from the University of Oxford’s Department of Paediatrics.
Former Little Mix singer and SMA campaigner Jesy Nelson expressed her joy at the announcement, saying: “Today is a day of hope”.
Giles Lomax, CEO for SMA UK and former Little Mix singer Jesy Nelson in Parliament Square, London, ahead of the SMA screening debate at Westminster Hall in London. (Image: Jordan Pettitt)
The singer, whose twin daughters were born prematurely in May 2025 and were shortly diagnosed with SMA said: “Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I’m incredibly proud to have supported.”
The pilot introduced the first routine newborn screening for SMA across four Thames Valley hospital trusts, including Oxford University Hospitals NHS Foundation Trust.
SMA, a rare but treatable genetic disease, affects approximately one in 10,000 births.
It can begin in the first three months of a child’s life and in its most severe form, can lead to the loss of 95 per cent of all motor neurons before the age of six months.
The condition can prevent babies from sitting up, crawling, or walking.
In the most severe cases, it can stop them from breathing or swallowing.
However, if detected early, treatment can significantly improve outcomes for affected children.
The testing process involves a simple heel prick to collect a small blood sample from the baby shortly after birth.
The announcement comes after a £4 million investment in the University of Oxford-led SENS study (Service Evaluation for Newborn Screening for SMA).
The study will assess the feasibility, clinical effectiveness, and cost-effectiveness of including SMA screening in the Newborn Blood Spot Screening Programme.
The study marks a significant milestone, bolstering the evidence base that could pave the way towards national rollout of SMA screening across the UK.
Three-year-old Grayce Pearson who has Spinal Muscular Atrophy (SMA) at the Scottish Newborn Screening Laboratory in Glasgow. (Image: Craig Meighan/PA Wire)
Professor Servais said: “This study represents a decisive step towards ensuring that every child born with SMA in the UK has the opportunity to be diagnosed and treated before irreversible damage occurs.
“We now have therapies that can fundamentally change the trajectory of this disease if we can identify affected infants early.”
Secretary of State for Health and Social Care, James Murray, added: “No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference.
“This expansion means babies across England will be tested from birth, giving them the best possible chance of a full and healthy life.”
The Department of Health and Social Care plans to adopt a similar approach to Scotland, which has already established a comparable testing programme with private sector funding.