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

TL;DR

This paper introduces a Dutch nationwide registry for pediatric cardiac arrest to improve prognostication and long-term care through standardized data collection and follow-up.

Contribution

The PROGNOSE registry is the first Dutch nationwide initiative to standardize pediatric cardiac arrest data collection and follow-up protocols.

Findings

The registry captures comprehensive data on pre-hospital factors, resuscitation, and post-return of circulation care.

Structured follow-up protocols are implemented to assess neurodevelopmental and psychosocial outcomes through age 17.

The registry aims to address knowledge gaps in pediatric cardiac arrest prognostication and clinical decision-making.

Abstract

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.

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.

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.

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