Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether he has made an estimate of the number of babies born with spinal muscular atrophy that may experience irreversible disability between August 2023 and the conclusion of the review into newborn screening.

In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).

The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.

Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.