Metachromatic Leukodystrophy
The question
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 2 December 2025 to Question 93697, whether he has made an estimate of the number of (a) preventable deaths and (b) cases of irreversible disability in children with Metachromatic Leukodystrophy over the last ten years; and how such outcomes are considered in UK National Screening Committee evaluations.
Answered by Ashley Dalton
When evaluating the evidence relating to a health condition such as metachromatic leukodystrophy (MLD), the UK National Screening Committee (UK NSC) considers important issues relating to the condition, the test, the treatment and the effectiveness of a screening programme. Considerations of the condition include reviewing the evidence of its frequency and/or severity, prevalence and incidence.
My rt. Hon. Friend, the Secretary of State for Health and Social Care, is advised by the UK NSC on the evidence on screening. The Committee, which is independent and made up of leading medical and screening experts, advises Ministers in all four nations of the United Kingdom. Where the Committee is confident that screening provides more good than harm, they recommend a screening programme.
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