Congenital Heart Surgeons Society Data Center
The Congenital Heart Surgeons Society's goal is to improve care for patients with CHD through collaborative research. The project encourages and stimulates investigation that will increase the knowledge of congenital cardiac physiology, pathology and therapy, and correlates and disseminates such knowledge. The data center is a research engine that extracts knowledge from the collective clinical experience of the membership. Currently, there is active enrollment of CHD kids with the following diagnoses: AAOCA (anomalous aortic origin of a coronary artery), left ventricular outflow tract obstruction (LVOTO), tricuspid atresia (TA), and atrioventricular septal defects (AVSD). Member surgeons are currently consenting, collecting and sharing clinical data, images and echoes/MRIs (reports and actual images on CDs) on a quarterly basis. Long-term follow-up is still under way for several other CHDs.
Go to CHSS Data Center website.