Technique or Application

The PediPERForm Learning Network congenital perfusion registry

¹ Department of Perfusion, Children’s Hospital Colorado, Aurora, Colorado 80045, USA
² Department of Cardiovascular Perfusion, Cincinnati Children’s Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio 45229, USA
³ Department of Perfusion, Norton Children’s Hospital, Louisville, Kentucky 40202, USA
⁴ Department of Cardiac Surgery, Frankel Cardiovascular Center, Michigan Medicine, University of Michigan, Ann Arbor, Michigan 48109, USA

^* Corresponding author: brian.mejak@childrenscolorado.org

Received: 3 September 2024
Accepted: 25 November 2024

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 pCO₂. 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.