Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, when he expects the UK National Screening Committee to publish its recommendation following the consultation on newborn screening for metachromatic leukodystrophy; and when Ministers expect to make a decision on whether to add metachromatic leukodystrophy to the newborn blood spot screening programme.

The Government is advised on all screening matters by the UK National Screening Committee (UK NSC), an independent scientific advisory committee which is made up of leading medical and screening experts.

The UK NSC considered newborn screening for metachromatic leukodystrophy (MLD), undertaking a review and a three-month consultation on those findings which closed on 5 August 2025. At the November 2025 UK NSC meeting, committee members concluded that there was not enough evidence to support newborn screening for MLD. Further information on the meeting is available at the following link:

https://nationalscreening.blog.gov.uk/2026/01/08/minutes-published-of-uk-nsc-november-2025-meeting/

However, members agreed that MLD would be a good candidate for inclusion in a multi-condition in-service evaluation within the United Kingdom newborn blood spot screening programme.

The Department is currently considering what would be needed to introduce such an evaluation.