The UK National Screening Committee (UK NSC) has launched a public consultation on whether newborn screening for Metachromatic Leukodystrophy (MLD) should be introduced in the UK.
In 2023, the UK NSC commissioned an Evidence Map to assess the volume and type of available research on newborn screening for MLD. The findings recommended that MLD be added to the list of conditions regularly reviewed by the Committee and warranted a more detailed assessment.
This year, Kleijnen Systematic Reviews Ltd completed a comprehensive evidence summary, examining:
- The accuracy of available screening tests for MLD
- The effectiveness of treatments when MLD is identified early
- The cost effectiveness of introducing a newborn screening programme for MLD
The UK NSC is now seeking feedback from all stakeholders, including MLD families, medical professionals, researchers, and advocacy organisations. This is a vital opportunity to ensure the voices of those affected by MLD are heard and to help shape the future of newborn screening in the UK.
We strongly encourage everyone in the MLD community to take part in this important consultation. The deadline for responses is August 5th 2025.
PARTICIPATE HERE