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Paediatric Resuscitation Outcome in Children with Heart Disease (ProCHD): protocol of a Germany-wide multicentre,
Franziska Markel1,2,3, Peter Kramer2,4, Jeanine Anand2,4
1Department of Psychocardiology, Department of Developmental Pediatrics, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany.
Insights
This registry collects data on paediatric cardiac arrest in children with heart disease to improve understanding and outcomes. It aims to establish a standardized approach for data collection and follow-up for this vulnerable population.
Area of Science:
- Pediatric Cardiology
- Critical Care Medicine
- Clinical Research
Background:
- Paediatric cardiac arrest (CA) carries significant risks of morbidity, disability, and mortality.
- Children with congenital heart disease have a substantially increased risk of CA.
- Limited data exists for paediatric CA in children with heart disease.
Purpose of the Study:
- To establish a standardized data collection and follow-up structure for paediatric cardiac arrests associated with heart diseases in Germany.
- To address the knowledge gap regarding this specific patient population.
- To understand the epidemiology, guideline adherence, and risk factors of paediatric CA in children with heart disease.
Main Methods:
- A multicentre, prospective, open registry enrolling paediatric patients experiencing CA requiring at least 2 minutes of cardiopulmonary resuscitation.
- Collection of demographical, clinical, resuscitation, and outcome data following Utstein guidelines.
- Inclusion of neurological assessments, cognitive/motor tests, and patient-reported outcome measures; data pseudonymised and stored in a central REDCap database.
Main Results:
- Primary outcomes include survival to discharge and neurodevelopmental outcomes at discharge and 2 years post-discharge.
- Data analysis will focus on epidemiology, guideline adherence, and risk factors.
- Results will be presented at conferences and submitted for peer-reviewed publication.
Conclusions:
- This registry provides a crucial framework for understanding and improving care for paediatric cardiac arrest in children with heart disease.
- Standardized data collection and follow-up are essential for this understudied population.
- Findings will inform clinical practice, guideline development, and future research in paediatric cardiac critical care.
Introduction:
While paediatric cardiac arrest is a rare event, consequences for the patients are significant with a considerable risk of morbidity, disability and mortality. The risk of cardiac arrest is substantially increased in children with congenital heart disease. Nevertheless, there is a lack of data concerning this population. To close this knowledge gap, this multicentre, prospective, open registry aims to implement a standardised structure for data collection and follow-up of paediatric cardiac arrests associated with heart diseases in Germany.
Methods And Analysis:
All paediatric patients who experience a cardiac arrest and receive at least 2 minutes of cardiopulmonary resuscitation are invited to participate in this registry. The dataset comprises demographical, clinical, resuscitation and outcome data, collected in accordance with the Utstein guidelines. Neurological assessments, cognitive and motor tests are conducted at fixed intervals. Additionally, patient-reported outcome measures will be surveyed. Primary outcomes are survival to discharge and neurodevelopmental outcome after discharge and 2 years. The data are pseudonymised prior to submission to an online REDCap database, which is centrally hosted on a server located in Leipzig, Germany.
Ethics And Dissemination:
This study follows the Declaration of Helsinki and received ethical approval from the Ethics Committee in Leipzig. Registry results will allow us to understand the epidemiology, guideline adherence, risk factors and will be presented at conferences and submitted to a peer-reviewed journal for publication.
Trial Registration Number:
NCT05373498.
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