Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, when he expects to receive a formal recommendation from the UK national screening committee on newborn screening for spinal muscular atrophy.

A recommendation by the UK National Screening Committee (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, the SMA Newborn Screening ISE Partnership Board was set up to plan and develop work to shape the ISE. The National Institute for Health and Care Research’s Health Technology Assessment Programme is running a tender process to appoint researchers for this work.