A Dutch nationwide pediatric cardiac arrest registry with long-term follow-up - towards an international prognostication guideline.

Abstract

AIMS: Pediatric cardiac arrest is associated with high mortality and significant morbidity among survivors. International guidelines for prognostication remain limited due to small heterogeneous patient populations, variable post-return of circulation diagnostics, and insufficient long-term follow-up. Pediatric Resuscitation Prognostication and Outcomes Registry (PROGNOSE) is a Dutch nationwide, multicenter registry aiming to standardize data collection, establish uniform neuromonitoring reporting, and implement structured follow-up protocols. METHODS: The Pediatric Resuscitation Prognostication and Outcomes Registry (ClinicalTrials.gov ID: NCT06938009) collects data on pediatric cardiac arrest across Dutch pediatric intensive care units, extending the pediRES-Q collaborative. It includes patients <18 years with out-of-hospital cardiac arrest requiring emergency services and in-hospital cardiac arrest patients admitted to academic hospitals. Return of circulation is defined as sustained spontaneous circulation or via extracorporeal support. Exclusions include pre-existing Do Not Resuscitate orders or neonates < 24 h. The registry captures pre-hospital factors, resuscitation characteristics, post-return of circulation care, neuroprognostication markers (biomarkers, electroencephalography, imaging), and long-term outcomes. Structured follow-up occurs at 3-6 months, 12 months, and evaluations through age 17 for neurodevelopmental, psychosocial, and functional outcomes. CONCLUSION: The Pediatric Resuscitation Prognostication and Outcomes Registry (PROGNOSE) represents the first nationwide initiative to standardize data collection on pediatric cardiac arrest, post-return of circulation care and implement structured follow-up protocols in the Netherlands. This registry aims to address critical knowledge gaps, providing foundation for evidence-based prognostication, clinical decision-making, and long-term care policy recommendations. Future expansion efforts will focus on integrating pre-hospital data, extending follow-up into young adulthood, and strengthening international collaboration through the pediRES-Q network.