Report of the Task Force on Research in Pediatric Cardiovascular Disease

Since the 1940s, when major breakthroughs occurred in the surgical treatment of congenital malformations, great strides have been made in the treatment of cardiovascular disease in infants and children. Nonetheless, significant difficulties remain that hinder our ability to treat the very youngest and smallest patients with cardiovascular disease, including those still in utero. Heart disease in infants, children, and adolescents is still a large problem, with substantial burden and cost for both families and society. Although surgical and technological innovations have greatly advanced treatment of cardiovascular disease in adult patients, treatment of infants, children, and adolescents has not kept pace. The most obvious reason for this situation is that children are not simply smaller adults. If they were, the appropriate miniaturization of instruments and equipment, scaling down from adults to children, would be sufficient. However, when considering interventions for neonates, or even fetuses, one must remember that they exhibit marked physiological characteristics that distinguish them from adults, such as increased heart rate and immature tissue development. To stimulate clinical research and thereby enhance our ability to treat infants, children, and adolescents, the National Heart, Lung, and Blood Institute (NHLBI) has launched 2 major initiatives. First, in May of 2000, we issued a solicitation for the establishment of a Pediatric Heart Disease Clinical Research Network of interactive pediatric clinical research centers (http://grants.nih.gov/grants/guide/rfa-files/RFA-HL-00-013.html). Its purpose is to promote efficient evaluation of innovative treatment methods and management strategies for children with structural congenital heart disease, inflammatory heart disease, heart muscle disease, and arrhythmias. We anticipate that one outcome of the Network will be to promote rapid dissemination of the findings from these clinical studies to the medical community. Seven clinical centers and a data-coordinating center were funded in September 2001, and it is expected that 2 protocols will be under way by the …