Regular blog readers will know that the in-service evaluation of newborn screening for spinal muscular atrophy (SMA), as recommended by the UK National Screening Committee (UK NSC), will start in NHS services in England from October 2026.
SMA is a rare but serious inherited condition that affects a person’s ability to move, speak, swallow and breathe. The UK NSC recommended an ISE to help answer important evidence gaps and demonstrate how a population-wide newborn screening programme for SMA would work in practice.
The plan was to start the evaluation in the 7 newborn screening laboratories in England that already have the equipment needed to start screening for SMA.
However, all partners involved in the planning of the ISE want to extend the evaluation across the rest of England to ensure as many babies as possible have access to this study.
To enable this to happen, the government has issued a call to collaborate to seek additional funding to bring the remaining 6 English laboratories on board.
Any organisations interested can respond via the DHSC call to collaborate.
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seen at 16:33, 20 July in UK National Screening Committee.