Swiss National Registry for Adults Living With Congenital Heart Disease Tracking Long-Term Outcomes and Treatments in Specialized Swiss Centers

What this Trial Is About

Researchers are collecting detailed health information about adults who were born with congenital heart disease and are being treated in specialized centers in Switzerland. This registry study aims to better understand long-term complications and treatment outcomes for this growing population, as advances in pediatric heart care have allowed most children with congenital heart defects to reach adulthood. The study is observational and focuses on gathering data rather than testing treatments. Participants in this study will have their medical data, including diagnoses, previous treatments, and any cardiac complications, recorded after each visit to a participating center. The information is entered securely into a web-based database to create a nationwide registry. This registry will help provide a clearer picture of the adult congenital heart disease population in Switzerland and improve knowledge about their long-term health outcomes. During the study, participants health status will be monitored annually for up to 20 years, with a focus on tracking cardiac complications and mortality. The study involves routine clinical visits where data is collected based on patients ongoing care. The registry helps researchers understand the health trends and risks in this group over time without altering usual medical care.

Swiss National Registry of Adults With Congenital Heart Disease