Sunday night I attended a charity event for “European Heart for Children,” a humanitarian initiative launched on Saturday by Roberto Ferrari, current President of ESC with his wife and others. The program’s purpose is to improve treatment of pediatric congenital heart disease in third world and emerging economy countries where treatment of this condition is inadequate. The program will offer training to health care providers to help them improve the care they offer, as well as educate physicians and politicians on CHD. Says Ferrari:  

“To me it's completely shocking to see first-hand that in some countries...the only hope for a child born with congenital heart disease is to go to another country for an operation otherwise they'll die. We hope that our initiative will give some hope to the children of Europe.”

Other CHD Issues
Treatment of pediatric CHD is a serious problem, not only because of the inadequate treatment in some countries, but also because of the lack of research. As a recent Wall Street Journal article put it: “Hardly any of the myriad drugs and devices developed for ... cardiovascular disease are designed with kids in mind.” Because of this, when treating pediatric CHD, “physicians often must rely on instinct, back-of-the-envelope calculations and anecdotal case reports swapped at medical meetings, instead of the more rigorous clinical evidence.” I heard from various European pediatric cardiologists and physicians here engaged in CHD diagnosis and treatment that Eastern European and some European countries have challenges in the CHD and adult CHD that still need attention locally.

Clearly, this lack of knowledge about best evidence and therapeutics regarding CHD is unacceptable. This is why the ACC two years ago began laying the ground work for a registry to look at outcomes and treatment for pediatric and adult CHD. The registry, called IMPACT (For Improving Pediatric and Adult Congenital Treatment), is in pilot phase currently but will launch officially in 2010. It will be the first national registry to provide data relating to demographics, acute management and in-hospital outcomes for patients undergoing diagnostic catheterization or catheter-based interventions for congenital heart disease. Also, it will serve as the benchmark for comparing catheter-based interventions to the more traditional surgically-based interventions currently in place. Once it’s nationally rolled-out, the pilot is going to provide invaluable knowledge about what works in the treatment of CHD and what doesn’t.

*** European Heart for Children logo. From ESC's Web site. ***