Metachromatic Leukodystrophy: Screening
The question
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
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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