The PediPERForm Learning Network congenital perfusion registry

TL;DR

The PediPERForm Learning Network registry was created to improve pediatric cardiac surgery outcomes through data collection and quality improvement.

Contribution

The novel contribution is the development of the first congenital perfusion registry, PediPERForm, to support pediatric cardiac surgery quality initiatives.

Findings

The PediPERForm Learning Network began collecting data in October 2021.

The registry was developed in response to the lack of congenital cardiopulmonary bypass registries.

It builds on existing adult cardiac surgery registries like PERForm.

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.

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