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 adding metachromatic leukodystrophy (MLD) to the NHS newborn blood spot screening programme.

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.