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 help ensure that the UK National Screening Committee’s in-service evaluation of newborn screening for spinal muscular atrophy covers a wide geography.

Planning and development work to shape the in-service evaluation (ISE) of newborn screening for spinal muscular atrophy (SMA) is ongoing. This is being steered by the SMA partnership board that includes Department officials, the UK National Screening Committee, NHS England, the National Institute for Health and Care Research (NIHR), and patient and public representatives. The SMA partnership board has three sub-groups, one of which is the laboratory subgroup. This subgroup has experts with a broad range of experience of laboratory testing of newborn blood spots both in the United Kingdom and internationally. Their expertise ensures that laboratory requirements for successfully rolling out SMA ISE are fully considered and represented in the ongoing planning work.

The number of laboratories in England that will form part of the ISE is under consideration by the SMA partnership board led by NHS England.

The geographical coverage of the ISE is also under consideration by the SMA partnership board, and will be determined by the number of laboratories with the technology and processes needed to roll out the ISE.

Earlier this summer, the NIHR advertised the research call for the SMA ISE, with further information available at the following link:

https://www.nihr.ac.uk/funding/spinal-muscular-atrophy-screening/2025338

A decision on the shape and roll out of the ISE will be made after the research call process has concluded.