SMA newborn screening to be trialled across England

Spinal muscular atrophy (SMA) screening will be rolled out to every newborn in England by October 2027, the UK Department of Health has announced.

SMA is a rare genetic condition that progressively damages nerves controlling movement, breathing and swallowing. A gene therapy is available (see BioNews 1087), but it is most effective when administered before symptoms emerge.

'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', said health minister James Murray. 'This expansion means babies across England will be tested from birth, giving them the best possible chance of a full and healthy life, and another step in the right direction as we do all we can to reduce health inequalities'.

Around 70 babies are born each year in the UK with SMA. Because SMA is a recessive condition, parents are usually unaware they are carriers and often have no reason to suspect their child might be affected until symptoms appear.

The government initially announced screening for those born in areas with laboratories already equipped to test for SMA, covering around 72 percent of newborns across England. This move was part of a study to inform the UK National Screening Committee's future decision on whether to permanently add SMA to the newborn blood spot test. The updated provision means the seven laboratories already equipped to test will begin in October 2026, and by October 2027 a further six will join the trial.

'No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons', said Giles Lomax, chief executive of SMA UK. 'We are incredibly grateful to the families, clinicians, researchers, supporters and campaigners who have helped us reach this point'.

Parents of affected children campaigned for national screening, including singer Jesy Nelson, whose twin daughters have SMA. She said: 'This is a victory for every family affected by SMA. Whilst it can't change the future of our children, I know it marks the beginning of a brighter future for future SMA families.'

As a 2023 review concluded that evidence on SMA screening cost-effectiveness was insufficient, the UK National Screening Committee has historically not recommended its use. Scotland added SMA to their newborn screening programme in March 2026 (see BioNews 1333), but no plans to introduce screening in Wales or Northern Ireland have been announced.