We are saddened to share the news that the UK National Screening Committee have made the decision not to add Metachromatic Leukodystrophy (MLD) to the newborn screening programme in the UK.
Screening for MLD was not recommended because it’s not currently known if:
- ‘the screening test is accurate and if a suitable test cut-off level has been set’
- ‘early treatment as a result of screening improves long-term health outcomes’
We will continue with our commitment to work towards MLD and ALD being added to the list of conditions screened for at birth. We will do this by attending relevant meetings and presenting to share our voice about the important of newborn screening for these conditions.
To read the UK National Screening Committee’s decision: Metachromatic leukodystrophy – UK National Screening Committee
