Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of introducing a permanent newborn screening programme for spinal muscular atrophy on the Government's Life Sciences Vision ambition to make the UK a world leader for (a) access and (b) uptake of new and innovative treatments and technologies.

The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.

Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.

Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.