The European Congenital Heart Defects Surgery Database experience: Pediatric European Cardiothoracic Surgical Registry of the European Association for Cardio-Thoracic Surgery

Abstract

The initial purpose of collecting data on the outcome of congenital heart surgery procedures across Europe was to make possible comparison of results and definition of mortality and morbidity risk factors as well as targeting research activities. The European Congenital Heart Surgeons Foundation, established in 1992, created the European Congenital Heart Defects Database, precursor to today's Pediatric European Cardiothoracic Surgical Registry. In 1999, initiatives of the Society of Thoracic Surgeons and the European Association for Cardio-Thoracic Surgery resulted in a series of conferences aimed at arriving at a standardized nomenclature and reporting strategies as a foundation for an international database. In April 2000 the International Congenital Heart Surgery Nomenclature and Database Project published a minimum dataset of 21 items and lists of 150 diagnoses, 200 procedures, and 32 complications, as well as 28 extracardiac anomalies and 17 preoperative risk factors. Since January 2000 the Pediatric European Cardiothoracic Surgical Registry has officially operated from the Department of Cardiothoracic Surgery at the Children's Memorial Health Institute in Warsaw, Poland, under the auspices of the European Association for Cardio-Thoracic Surgery and the responsibility of Bohdan Maruszewski. As of March 2001, 84 cardiothoracic units from 33 countries had registered in the database and data on almost 4,000 procedures have been collected. Participation in the database is free of charge through the internet for all participants. Development of data validation protocols is a work in progress.