Abstract
Congenital heart disease is the most common birth defect, with an estimated prevalence of 8 per 1,000 live births. Advances in diagnosis, surgery, and cardiac intervention (including prenatal) have markedly improved survival, with over 90% of children with congenital heart disease now surviving to adulthood, substantially increasing the burden of adult congenital heart disease. However, successful treatment does not equate to cure: adults with congenital heart disease remain at risk of heart failure, arrhythmia, infective endocarditis, need for reoperation or reintervention, and premature death, including sudden death, making lifelong cardiac follow-up mandatory. The article highlights the difficulty of obtaining robust evidence from large randomized controlled trials in this population, with fewer than 1% of treatment recommendations for adult congenital heart disease based on such trials. Observational studies using inpatient data from individual centers therefore represent a necessary, cost-effective starting point for generating new research hypotheses. Over the longer term, integrating long-term follow-up data, multicenter registry data, and biological/genetic data from biobanks (e.g., the National Registry for Congenital Heart Disease in Berlin, Germany) is needed to strengthen the evidence base, clarify pathophysiological mechanisms, and improve treatment and care outcomes for adults with congenital heart disease.
