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

Marijn Albrecht; Maayke Hunfeld; Annemieke Arkesteijn-Muit; Karolijn Dulfer; Matthijs de Hoog; Gabry de Jong; Rogier de Jonge; Aldert Lamoré; Vinay Nadkarni; Corinne Buysse; PROGNOSE Group Collaborative Investigators

doi:10.1016/j.resplu.2025.100976

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

Resusc Plus. 2025 May 9:24:100976. doi: 10.1016/j.resplu.2025.100976. eCollection 2025 Jul.

Collaborators

PROGNOSE Group Collaborative Investigators:
Nikki Schoenmaker⁶, Annelies van Zwol⁷, Geanne Krabben-de Vlaam⁸, Nicole de la Haye⁹, Jennifer Walker¹⁰

Affiliations

¹ Department of Neonatal and Pediatric Intensive Care, Division of Pediatric Intensive Care, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands.
² Department of Pediatric Neurology, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands.
³ Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC Sophia Children's Hospital, Rotterdam, the Netherlands.
⁴ Department of Information Technology, Erasmus MC, Rotterdam, the Netherlands.
⁵ Department of Anesthesiology and Critical Care Medicine, The Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, PA, United States.
⁶ Amsterdam UMC, Department of Pediatric Intensive Care, University of Amsterdam, Amsterdam, the Netherlands.
⁷ Radboud University Medical Center, Department of Pediatric Intensive Care Medicine, Nijmegen, the Netherlands.
⁸ UMCG Beatrix Children's Hospital, Department of Pediatric Intensive Care, Groningen, the Netherlands.
⁹ Maastricht UMC+ MosaKids Children's Hospital, Department of Pediatric Intensive Care, Maastricht, the Netherlands.
¹⁰ UMCU Wilhelmina Children's Hospital, Department of Pediatric Intensive Care, Utrecht, the Netherlands.

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.

Keywords: Pediatric cardiac arrest; Prognostication; Registry; post-ROC protocol.

Associated data

ClinicalTrials.gov/NCT06938009