The academic database: Lessons learned from the congenital heart surgeons' society data center

Abstract

During its more than 40 year history, The Congenital Heart Surgeons Society (CHSS) has evolved from an informal club to a mature organization. In 1985, Drs. John W. Kirklin and Eugene H. Blackstone founded the CHSS Data Center. Its purpose was to develop disease-specific inception cohorts of congenital heart disease (CHD) patients and extract knowledge from the combined clinical experience of centers across North America. The mission has evolved to training of research fellows, prospective testing of patients in our lifelong cohorts, organization of a tissue bank registry, and provision of quality improvement tools for members. The hub of this activity is in the CHSS Data Center, housed within the Hospital for Sick Children in Toronto. Our review will highlight lessons learned during the course of this evolution.