The charity ALD Life has commissioned researcher in HEDS to assess the cost-effectiveness of including ALD in the NHS Newborn Blood Spot Screening Programme. ALD is a rare inherited metabolic disease that is estimated to affect 1 in 20,000 males. It affects the nervous system and adrenal glands and can lead to progressive neurological disability and death. Studies have shown stem cell transplantation can improve survival and quality of life in some patients if conducted at the very early stages of the disease. The NHS Newborn Blood Spot Screening Programme currently tests all babies for nine conditions including six other inherited metabolic conditions.
The project will use mathematical modelling to assess the potential benefits and costs of screening for ALD. HEDS researchers have previously evaluated the clinical and cost-effectiveness of tandem MS-based screening for inherited metabolic conditions and the cost-effectiveness of expanding the NHS Newborn Blood Spot Screening Programme to include additional inherited metabolic conditions. The HEDS research team includes Alice Bessey, Jim Chilcott, Joanna Leaviss, and Anthea Sutton.