State-of-the-art review: The value of leveraging evidence and data (LEAD) in pediatric screening for familial hypercholesterolemia

Familial hypercholesterolemia (FH) is a common genetic disorder of lipid metabolism resulting in lifelong elevated levels of low-density lipoprotein cholesterol and early atherosclerotic cardiovascular disease. Although FH can be identified at young ages, it remains frequently undetected, underdiagnosed, and undertreated in the United States and around the world. Despite compelling data to support screening for FH in children, and universal lipid screening guidelines endorsed by the National Heart, Lung and Blood Institute and the American Academy of Pediatrics, screening practices in the United States remain controversial and suboptimal. The Family Heart Foundation launched its LEAD (Leverage Evidence and Data) Pediatric Initiative at the 2024 Family Heart Foundation 10th Annual Global Summit to help understand testing barriers, propose innovative solutions, and integrate improvement science to measure outcomes. Presentations highlighted common challenges with pediatric lipid screening and demonstrated creative process solutions to improve screening prevalence for children. This state-of-the-art review discusses common barriers to pediatric lipid screening, identifies process solutions, and explores innovative practices to increase the frequency of universal pediatric lipid screening.