Scoping Study with Genetic Alliance

We are working in collaboration with Genetic Alliance to carry out a Scoping Study. The aim of the scoping study is to investigate the perspective of adult males with an ALD (Adrenoleukodystrophy) or AMN (Adrenomyeloneuropathy) diagnosis in terms of new born screening.

Once we’ve determined what community views are via in depth interviews, we will then look to further the research by commissioning a full study. We hope our findings will strengthen our case to add ALD to the UK NBS programme by confirming that adult males would want a diagnosis from birth. It will be interesting to see what the findings of the study reveal, as we are aware the results may not support our case.

Alex - The Leukodystrophy Charity