Family Heart Foundation Urges Universal Screening to Detect Hidden Genetic Heart Risks in Children - Video

The Family Heart Foundation, a leading research and advocacy organization, announced the online publication of recommendations from a multidisciplinary panel in the Journal of Pediatrics to promote the early identification of children living with familial hypercholesterolemia (FH). A common life-threatening genetic condition that causes high cholesterol from birth, FH can lead to premature heart attacks and heart disease if it is not diagnosed until adulthood.

Despite national guidelines established in 2011 by the National Heart, Lung, and Blood Institute (NHLBI) and the American Academy of Pediatrics (AAP), the prevalence of pediatric universal lipid screening remains low, leaving the majority of affected children at high risk of heart disease decades earlier.

The research highlights strategies that could lead to improved universal guideline-recommended screening implementation.

Previous data published in the Journal of the American Medical Association and in Pediatrics indicate that only 11% of youth in the U.S. between the ages of 9 and 21 had documented lipid screening, and 30 to 60% of youth with dyslipidemia may be missed by targeted screening alone compared to universal lipid screening.

Many times, families do not understand that the cardiovascular disease that runs through their family for generations can be managed with early diagnosis. The publication in the Journal of Pediatrics lays out concrete actions that can be taken, and on which we have formed partnerships to support families and improve care for children.

Therefore, the goal of LEAD is to significantly impact missed opportunities to save hundreds of thousands of young lives from being cut short or burdened by early cardiovascular disease. The tools created by a working group representing patient, families, clinicians, and health systems as part of the Family Heart Foundation’s LEAD initiative and outlined in the Journal of Pediatrics will increase understanding among clinicians and parents about the importance of universal screening.

Ref: Accelerating Guideline Recommended Universal Pediatric Lipid Screening: Launch of the LEAD Pediatric Initiative Flyer, Jonathan N. et al. The Journal of Pediatrics, Volume 0, Issue 0, 114804. 10.1016/j.jpeds.2025.114804