Practical experience with databases for congenital heart disease: a registry versus an academic database

Increasingly, pooled data from multiple institutions are the source of published clinical results. A computerized database program is essential to compile and analyze clinical experience. The scope of data collection defines a database. Two types of databases, the registry and academic, are compared. In a registry database, some of the data are collected on all patients. The resources dedicated to data collection and entry are the practical limit to the extent of information in the database. The agreement on nomenclature for surgical diagnosis and procedure codes of congenital heart disease has paved the way for the development of a multi-institutional registry database. The registry database could provide a standard of care reference for early results after congenital heart surgery. The practical difficulty of data collection is obviated by limiting information to a basic minimum dataset. The academic database, in which all of the data are collected for a defined subset of patients, is designed to investigate a specific population of patients to generate new knowledge. It contains sufficient data to allow sophisticated statistical analysis to clarify the determinants of good and poor outcome, including early, mid- and long-term follow-up information. Multi-institutional pooling of detailed information derived from academic databases will be of increasing importance in generating new knowledge to foster improved therapy for patients with congenital heart disease.