Prospective Collection of Standardized Data in the Erlangen Fontan Clinic for Treatment and Monitoring of Patients with Univentricular Heart Defects and Fontan Circulation

What this Trial Is About

Researchers are studying patients with univentricular heart defects who have undergone Fontan surgery, focusing on long-term complications such as protein loss enteropathy, liver cirrhosis, heart failure, and arrhythmias. The study aims to identify factors that influence treatment outcomes and improve long-term care for these patients through systematic prospective data collection. The research explores how physical activity, psychological and social interventions, and other factors affect patient health over time. The study involves standardized and guideline-based treatment with ongoing assessments. Blood samples are taken at specific times to analyze immune system changes and metabolomics. Patients undergo specialized ultrasound examinations of the liver and kidneys, hemodynamic evaluations, and cardiopulmonary performance tests. The impact of individualized training plans and early interventions on complications is also examined. Participants will be monitored regularly with clinical evaluations, questionnaires addressing psychological and social factors, and laboratory tests. The study measures outcomes related to reducing mortality and morbidity and improving quality of life over a 50-year follow-up period. Researchers will document complications and treatment responses to better understand long-term care needs for patients with Fontan circulation.

Fontan-Sprechstunde