Recently the results from a study ‘Sex-specific newborn screening for X-Linked adrenoleukodystrophy’ (Monique Albersen, et al, 2022) in the Netherlands has been published their findings:
“The results of this pilot show the feasibility of employing a boys-only screening algorithm that identifies males with ALD without identifying untreatable conditions. This approach will be of interest to countries that are considering ALD newborn screening but are reluctant to identify girls with ALD because for girls there is no direct health benefit.”
To access article: https://doi.org/10.1002/jimd.12571
This is an important result as it establishes the basis of a reliable test for males only. This is a key driver for our application to have ALD added to the newborn screening programme in the UK given the Newborn Screening Committee’s reluctancy to test anyone (i.e. girls) with no direct health benefit.