All Newborns in England to Be Tested for Genetic Disease SMA in Major Study

All Newborns in England to Be Tested for Genetic Disease SMA in Major Study

  • All newborn babies in England will be screened for spinal muscular atrophy as part of a nationwide study led by scientists at the University of Oxford
  • Former Little Mix singer Jesy Nelson, whose twin daughters were diagnosed with SMA, has been campaigning for the screening for years
  • The life-changing gene therapies available for SMA must be given before symptoms appear, making early detection critical for affected babies

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Charlie Brown from Blackwood, Caerphilly, whose four-year-old daughter Dani was diagnosed with SMA when she was 13 months old, hopes Wales will follow England's lead
Newborn baby boy at the hospital with an identity tag on his feet. Image: Isabel Pavia
Source: Getty Images

All newborn babies in England are set to be tested for spinal muscular atrophy (SMA), a severe genetic disease, as part of a landmark medical study. Screening will begin in most parts of England from October 2026 and is expected to be fully expanded by October 2027.

SMA is a condition that weakens the muscles, affecting a child's ability to walk, breathe and swallow. In its most serious form, it can be fatal before a baby reaches the age of two. Gene therapies now exist that can correct the underlying genetic defect, but they must be administered before any symptoms appear. Once damage sets in, the treatments cannot reverse it, which is why early newborn screening is seen as essential.

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SMA screening could reach Wales

The announcement by @bbcnews page has been widely welcomed by families living with the condition. Former Little Mix member Jesy Nelson, whose twin daughters Ocean Jade and Story Monroe Nelson-Foster were diagnosed with SMA, has been one of the most prominent voices pushing for universal screening. Earlier this year, she shared that doctors had told her the girls would ‘probably never walk.’ She also spoke publicly about how her twins had to wear spinal jackets and foot splints during a heatwave.

Scotland already has SMA screening in place for newborns. The English study, which will be led by researchers at the University of Oxford, is expected to screen hundreds of thousands of babies. Results from the study will inform a final decision by the UK National Screening Committee on whether to make SMA testing a permanent part of newborn care. The test itself is simple, using a small blood sample taken from a heel shortly after birth.

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Gloria Masia (Human interest editor) Gloria Masia is a Human Interest Writer at Briefly News. She holds a Diploma in Public Relations from UNISA and a Diploma in Journalism from Rosebank College. With over six years of experience, Gloria has worked in digital marketing, online TV production, and radio. Email:gloria.masia@briefly.co.za