Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what the planned timetable is for the UK National Screening Committee's review of its advice on screening for spinal muscular atrophy.

Following the 2023 UK National Screening Committee (UK NSC) recommendation for an in-service evaluation (ISE) of spinal muscular atrophy (SMA), partnership planning between the Department, NHS England, the National Institute for Health and Care Research (NIHR), and other stakeholders has been in progress to implement an ISE in the National Health Service.

An ISE is a programme of work to develop high quality evidence in live NHS services. Successfully implementing the ISE will require funding, however, departmental budgets, including for the NHS beyond 2025/26, will be set through Phase 2 of the Spending Review, which will conclude and be published in June 2025.

The findings of the ISE, which will run over a few years, will provide the UK NSC with real-world evidence on feasibility, acceptability, and clinical and cost-effectiveness, as well as longer term health outcomes. Along with an SMA screening modelling study, these will inform a UK NSC recommendation on whether SMA should be added to the newborn blood spot screening programme.