Newborn screening is a process whereby newborns are tested for a selected group of rare diseases to help prevent symptoms and allow for early treatment.
Adrenoleukodystrophy (ALD) has already been added to newborn screening panels in US states such as New York and California. And work is still continuing to make sure more state legislators add ALD to newborn screening panels in America – or even add ALD to the Universal Newborn Screening Panel.
However, in the UK, a small number of rare conditions are added to the NHS Newborn Screening Programme, including Sickle Cell Disease and Cystic Fibrosis. More needs to be done to make sure ALD can be detected at birth – to help early diagnosis and save future young boys from tragic and devastating impact ALD can have.
Thanks to funding from Bluebird Bio – School of Health and Related Research (ScHARR) have started an economic survey to help highlight our case to the Department of Health. An economic survey will help us weigh intervention cost against current treatment, care and equipment cost to the NHS. You can read more about our work to assess the cost-effectiveness of adding Adrenoleukodystrophy (ALD) to the NHS newborn screening programme on the Health Economics and Decision Science website: http://scharrheds.blogspot.co.uk/2015/02/new-project-assessing-cost.html
We would like to again thank Bluebird Bio for making this possible. We expect an economic survey will take until Autumn this year – so please keep updated here for any future updates.