Congenital Heart Surgery Nomenclature and Database Project: overview and minimum dataset

Abstract

The International Congenital Heart Surgery Nomenclature and Database Project was organized for the purpose of standardizing nomenclature and reporting strategies that would establish the foundations for an international database. Worldwide representatives met for a series of conferences, at which time, issues of nomenclature were discussed and debated. Authors were chosen to review the various congenital heart diagnoses and reflect the mediated debate that followed. Manuscripts were prepared that reviewed the appropriate extant nomenclature, made recommendations for an inclusive rather than an exclusive method of reporting, and determined a hierarchical database scheme that would allow several levels of reporting based on the data input. This manuscript outlines two datasets for an international congenital heart surgery database, a minimum dataset and a comprehensive dataset. The comprehensive dataset includes all the imagined variables, in a hierarchical scheme, which are detailed enough to generate risk stratification analyses. The minimum dataset will include data points that would create an essential dataset, which would be mandatory for data sharing and would lend itself to basic interpretation of trends. The minimum dataset has four drop-down menus for short lists of: (1) noncardiac abnormalities/general preoperative risk factors, (2) diagnoses, (3) procedures, and (4) complications, from which clinicians can choose for entry into the minimum dataset. There was universal agreement for these datasets and short lists by the assembled members of the Society of Thoracic Surgeons-Congenital Heart Surgery Database Committee and representatives from the European Association for Cardiothoracic Surgery. The datasets and short lists were also unanimously approved by the Congenital Heart Surgery Committee of The European Association for Cardiothoracic Surgery and adopted by the European Congenital Heart Surgeons Foundation.