The Congenital Heart Surgeons’ Society (CHSS) is a group of 100 pediatric heart surgeons representing 65 institutions that specialize in the treatment of patients with congenital heart defects. The history of the group goes back to the early days of cardiac surgery in the mid of 1950s, when 16 surgeons started to meet annually to relate their early pioneering experience in operating on children with congenital heart defects.
In 1985 Dr. John Kirklin and Dr. Eugene Blackstone proposed that the CHSS surgeons pool their experience in managing infants with rare congenital anomalies of the heart and this concept lead to the establishment of the CHSS Data Center.
|Dr. John W. Kirklin
Drs. Kirklin and Blackstone recognized that the occurrence of congenital heart disease is low, (i.e. 8/1000 live births) and that any single institution requires a great deal of time to acquire sufficient experience to treat these lesions. By pooling the experience of all the CHSS members, Drs Kirklin and Blackstone proposed that the CHSS surgeons could improve their ability to determine the best methods of treating our patients.
The first group of patients studied included all babies born with complete transposition of the great arteries who were admitted to any of the CHSS institutions within the first 2 weeks of life. During the four years of data collection (1985-1989), information on over 900 babies with transposition was collected.
Data collection required the establishment of a Data Center, initially in Birmingham, Alabama. The personnel in the Data Center collated the information, collected reports from the various institutions, and entered all of the information into computerized data files. They also conducted an annual review to follow the progress of the babies entered in the study. The era of data collection for these patients was an important one because the surgical management of the neonates with transposition changed dramatically from an ‘atrial’ or ‘inflow’ redirection to an ‘outflow’ or ‘arterial’ operation. The former was not performed until age of 3 to 18 months, whereas the arterial switch operation was performed routinely in the first two weeks of life. The data analysis on these patients has resulted in a wealth of information that is contained in 7 publications to date.
|Dr. Eugene H. Blackstone
Currently, Cleveland Clinic, Ohio
The success of data collection in the transposition babies led to 10 subsequent studies of infant groups including pulmonary atresia intact septum, pulmonary stenosis, interrupted aortic arch, coarctation, critical aortic stenosis, aortic atresia, tricuspid atresia, pulmonary valved conduits and most recently unbalanced atrio-ventricular septal defect and anomalous aortic origin of a coronary artery.
In 1997, the Data Center moved from Birmingham, Alabama to the Hospital for Sick Children in Toronto. The Data Center employs 5 full-time people and has three physicians/surgeon-consultants. Funding is provided by the institutions of the surgeon members, and substantial support by the Hospital for Sick Children. In addition, since 2001 a surgeon-in-training has joined the Data Center staff to spend a 2-year Fellowship to learn data management and statistical analysis while earning a post-graduate degree from the University of Toronto. The Fellowship was named the John W. Kirklin / David A. Ashburn Fellowship to honour our founder Dr. Kirklin and our 1st Fellow, Dr. David A Ashburn Jr. who died tragically in an aircraft accident when retrieving a heart for a transplant. (See CHSS Data Center Fellows of our website)