image AHASCAReport2022 1000x866 - Incidence of SCA in Youth

The precise incidence of SCA in youth is presently unknown due to the lack of a mandatory and systematic national registry of SCA/SCD in youth. Parent Heart Watch strongly advocates for the establishment of such a registry to provide more accurate data that will motivate new research and strategies that will lead to SCA and SCD prevention. Our efforts were instrumental in the establishment of the Sudden Death in the Young Registry—the first federal effort to document and evaluate SCA in youth.
The often quoted 2,000 deaths was published in 2008 using 2005 National Vital Statistics data—now incredibly outdated compared to the body of work across the last two decades. While AHA Heart Disease & Stroke Statistics Reports are generated annually, it’s obvious a commitment to a realistic estimate of SCA in youth was abandoned, as evidenced by the exact same total being reported for seven years running using stagnant data from the Resuscitation Outcomes Consortium (ROC) when current data from the Cardiac Arrest Registry to Enhance Survival (CARES) was available.
In contrast, a 2020 study that tapped pediatric out-of-hospital cardiac arrest data from the National Emergency Medical Services Information System (NEMSIS) estimates there are over 23,000 youth under 18 years old stricken annually in the U.S. Even the American College of Cardiology published a competing estimate to the unresponsive AHA reporting, while both organizations typically oppose early detection heart screening for youth. How can numbers like this be acknowledged and yet no solutions sought?