Congenital heart disease (CHD) is the most common birth defect, affecting more children each year than pediatric cancer and pediatric AIDS combined. Only 25 years ago, the most severe defects were untreatable, often resulting in death in newborns. Recent advances have allowed children with these complex cardiac malformations to be successfully treated. Secondary to these marked improvements across the spectrum of cardiac malformations it is estimated that there are one million adult survivors with CHD.
As survival rates have improved, the attention of congenital cardiovascular medicine providers has turned from simply achieving survival to maximizing quality of life outcomes, including neurodevelopment, behavior, social adjustment, growth and impact on the family. Now that we are approaching our survival goals, it is important to begin the process of examining other important intermediate- and long-term outcomes. These data are crucial for us to understand how we may fine tune our management to optimize outcomes for children and adults with congenital heart disease.
In addition to clinical outcomes, we are beginning to understand the importance of the effect of cellular, molecular and genetic inter-patient variability on both survival and long-term results. By understanding these factors, we can begin to tailor our approach not only to a specific defect, but to a specific patient with a specific genetic makeup.
In an effort to optimize not only the quantity (e.g., number of years of survival) but the quality of life for our patients through linking basic science, clinical care of patients, and measures of long-term outcomes we have brought together the expertise of multiple individuals to form the Michigan Congenital Heart Outcomes Research and Discovery unit (M-CHORD). M-CHORD is a collaboration between individuals from different backgrounds and disciplines with a common interest in the patient with CHD. Each team member brings complimentary areas of nationally and internationally recognized expertise in their field to form this critical mass of people. At the University of Michigan, we are uniquely positioned to utilize outcomes research to drive clinical treatment decisions. The Michigan Congenital Heart Center is one of the two largest CHD programs in the United States. The Child Health Evaluation and Research unit is a national leader in the analysis of the child health care system. The University of Michigan Health System is one of the few in the country with a dedicated service for adult survivors of CHD.