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 adequacy of opportunities available to the patient community to input into the (a) design and (b) delivery of the UK National Screening Committee’s upcoming in-service evaluation of spinal muscular astrophy screening in the NHS.

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.