The PediPERForm Learning Network congenital perfusion registry

Area of Science:

• Medical informatics
• Cardiovascular surgery
• Health services research

Background:

• Medical procedural registries are vital for shared decision-making, quality assessment, and public reporting of outcomes.
• Existing registries like the Extracorporeal Life Support Organization (ELSO) and The Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD) have demonstrated significant contributions.
• Registries in adult cardiac surgery, such as the Perfusion Down Under Collaborative and the PERForm registry, have driven quality improvement initiatives.

Purpose of the Study:

• To highlight the role of medical procedural registries in improving healthcare quality and patient outcomes.
• To detail the development and establishment of a dedicated congenital perfusion registry.
• To introduce the PediPERForm Learning Network (PLN) as a new resource for congenital heart surgery.

Main Methods:

• Review of the functions and impacts of established medical procedural registries.
• Description of the collaborative efforts to develop a pediatric perfusion registry.
• Initiation of data collection by the PediPERForm Learning Network (PLN) in October 2021.

Main Results:

• Registries facilitate risk prediction, performance benchmarking, and quality improvement in medical procedures.
• The development of objective mortality and complexity stratification categories has been achieved through registries.
• The PERForm registry has enabled targeted quality improvement initiatives in adult cardiac surgery through benchmarking and collaborative learning.

Conclusions:

• Medical procedural registries are essential tools for advancing patient care and surgical quality.
• The establishment of the PediPERForm Learning Network (PLN) addresses a critical gap in congenital heart surgery data collection.
• The PLN is poised to support quality improvement and evidence-based practices in pediatric perfusion.