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Congenital Heart Surgeons' Society Center for Research and Quality
History of the CHSS Data Center
Dr. John W. Kirklin
Dr. John W. Kirklin

The Congenital Heart Surgeons' Society (CHSS) is a group of over 180 pediatric heart surgeons representing over 80 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 1970s, when 16 surgeons started to meet annually to relate their early pioneering experience in operating on children with congenital heart defects1.

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.

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.

Dr. Eugene H. Blackstone
Dr. Eugene H. Blackstone

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 9 publications to date.

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.

Dr. David A. Ashburn Jr.
Dr. David A. Ashburn Jr.

In 1997, the Data Center moved from Birmingham, Alabama to the Hospital for Sick Children in Toronto. The Data Center employs over 8 full-time people. 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.

1History of the Congenital Heart Surgeons' Society Constantine Mavroudis and William G. Williams, World Journal for Pediatric and Congenital Heart Surgery, October 2015; vol. 6, 4: pp. 541-550.

Meza J, McCrindle BW, Blackstone EH, Caldarone CA, Williams WG, DeCampli WM. CHSS Kirklin/Ashburn Fellowship: Legacy and Promise

Wilder TJ, McCrindle BW, Hickey EJ, DeCampli WM, Williams WG, Caldarone CA, Blackstone EH. Making sense of longitudinal data: changes in ventricular function in babies with a functional single ventricle. World Society for Pediatric and Congenital Heart Surgery 4th Scientific Meeting. São Paulo, Brazil, July 2014.

Caldarone CA, Williams WG. The Congenital Heart Surgeons Society Datacenter: unique attributes as a research organization. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2010;13(1):71-5. doi: 10.1053/j.pcsu.2010.01.007.

Hickey EJ, McCrindle BW, Caldarone CA, Williams WG, Blackstone EH. Making sense of congenital cardiac disease with a research database: The Congenital Heart Surgeons' Society Data Center. Cardiol Young. 2008 Dec;18 Suppl 2:152-62. doi: 10.1017/S1047951108002849.

Incremental History of the Congenital Heart Surgeons’ Society (2014-2018), November 2018 World Journal for Pediatric and Congenital Heart Surgery 9(6):668-676

History of the Congenital Heart Surgeons' Society, October 2015 World Journal for Pediatric and Congenital Heart Surgery 6(4):541-550