Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that newborn screening for spinal muscular atrophy is commenced immediately.

On all aspects of population and targeted screening, Ministers are advised by the UK National Screening Committee (UK NSC). A recommendation by the UK NSC on newborn screening for spinal muscular atrophy (SMA) is expected following the conclusion of an in-service evaluation (ISE), which is needed to answer several outstanding questions related to the implementation of a screening programme for SMA.

The UK NSC recommended an ISE of newborn blood spot screening for SMA in National Health Services in 2023. Since then, SMA Newborn Screening ISE Partnership Board was set up to plan and develop work to shape the ISE. This includes planning for newborn laboratories to be able to screen blood spot samples for SMA.

The National Institute for Health and Care Research’s Health Technology Assessment Programme is running a tender process to appoint researchers for the ISE which is a necessary step before the ISE can be rolled out.