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Written question asked by Gregory Stafford (Conservative) on Monday, 1 June 2026, in the House of Commons. It was due for an answer on Wednesday, 3 June 2026. It was answered by Sharon Hodgson (Labour) on Wednesday, 1 July 2026 on behalf of the Department of Health and Social Care.


Metachromatic Leukodystrophy

Question

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of adding metachromatic leukodystrophy (MLD) to the NHS newborn blood spot screening programme.

Answer

Members of the UK National Screening Committee (UK NSC) have agreed that metachromatic leukodystrophy (MLD) would be a good candidate for the inclusion in a multi-condition in-service evaluation (ISE) within the United Kingdom’s newborn blood spot (NBS) screening programme. The aim of this ISE would be to answer policy-relevant research questions that will allow the UK NSC to make recommendations on adding new conditions to the NBS programme where it is safe to do so.

The UK NSC is using the multi condition ISE in its work with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on adding more rare diseases, such as MLD, to the National Health Service newborn blood spot screening programme.


Secondary information

Type
Written question
Reference
5800
Session
2026-27
Subjects
Babies Screening Metachromatic leukodystrophy
Link
View this Written question on www.parliament.uk