Metachromatic Leukodystrophy: Screening

(asked on 29th August 2025) - View Source

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 potential merits of including metachromatic leukodystrophy in the newborn blood spot test.


Answered by
Ashley Dalton Portrait
Ashley Dalton
Parliamentary Under-Secretary (Department of Health and Social Care)
This question was answered on 5th September 2025

The UK National Screening Committee (UK NSC) considered newborn screening for metachromatic leukodystrophy (MLD) in 2023. At that time, it concluded that the available evidence on screening test accuracy and cost-effectiveness, though limited, warranted further review. It also found that the volume and type of evidence relating to the benefits and/or harms of treatments in presymptomatic patients with MLD was sufficient to justify a more in-depth review of the evidence.

Since then, a further review has been undertaken. A three-month consultation on those findings closed on 5 August 2025. The UK NSC will consider the responses to this consultation in due course.

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