Abstract
Medical procedural registries are uniquely positioned to support shared decision-making through risk prediction modeling, support quality assessment and improvement through performance benchmarking, and provide public reporting of evidence-based practices and outcomes. For example, the Centers for Disease Control and Prevention (CDC) consulted the Extracorporeal Life Support Organization (ELSO) registry to assess the severity of the swine flu outbreak in 2009-2010. The development and growth of The Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD) has positively contributed to the congenital heart surgery community by developing objective mortality STAT categories and complexity stratification for operations, a common nomenclature for classifying operations and reporting the costs associated with complications for nine benchmark operations. Within the setting of adult cardiac surgery, the Perfusion Down Under Collaborative has used its registry to develop quality improvement initiatives, including those related to the management of arterial outlet temperature, glucose, and arterial pCO(2). The PERForm registry leverages data from nearly 50 US hospitals to support targeted quality improvement initiatives within the setting of adult cardiac surgery. The PERForm registry participants receive benchmark reports and participate in quarterly collaborative learning meetings noted for unblinding hospital performance data. In 2014, with no current congenital cardiopulmonary bypass (CPB) registries, various experts within the congenital perfusion community and leaders from the PERForm registry began working to develop a pediatric perfusion registry. From this work, the PediPERForm Learning Network (PLN) and its associated congenital perfusion registry became active and began collecting data in October 2021.