{
  "abstract": "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.",
  "authors": [
    {
      "affiliations": [
        "Department of Psychocardiology, Department of Developmental Pediatrics, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany",
        "Department for Congenital Heart Disease - Pediatric Cardiology, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany",
        "Department for Pediatric Cardiology, Leipzig Heart Centre University Hospital, Leipzig, Germany"
      ],
      "name": "Franziska Markel"
    },
    {
      "affiliations": [
        "Department for Congenital Heart Disease - Pediatric Cardiology, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany",
        "Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Charité - Universitätsmedizin Berlin, Berlin, Germany"
      ],
      "name": "Peter Kramer"
    },
    {
      "affiliations": [
        "Department for Congenital Heart Disease - Pediatric Cardiology, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany",
        "Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Charité - Universitätsmedizin Berlin, Berlin, Germany"
      ],
      "name": "Jeanine Anand"
    },
    {
      "affiliations": [
        "Pediatric Intensive Care, Department of Pediatrics and Adolescent Medicine, University Hospital Tübingen, Tübingen, Germany"
      ],
      "name": "Ellen Heimberg"
    },
    {
      "affiliations": [
        "Department of Pediatric Cardiology, University Hospital Bonn, Center of Paediatrics, Bonn, Germany"
      ],
      "name": "Victoria Herbsleb"
    },
    {
      "affiliations": [
        "Department of Pediatric Cardiology, University Hospital Bonn, Center of Paediatrics, Bonn, Germany"
      ],
      "name": "Valérie Amann"
    },
    {
      "affiliations": [
        "Department of Pediatric Cardiology, Rheinisch-Westfälische Technische Hochschule Aachen, Aachen, Germany"
      ],
      "name": "Ulrike Herberg"
    },
    {
      "affiliations": [
        "Department for Pediatric Cardiology, Hannover Medical School Centre for Paediatrics and Adolescent Medicine, Hanover, Germany"
      ],
      "name": "Florian von Borell du Vernay"
    },
    {
      "affiliations": [
        "Department for Pediatric Cardiology, Hannover Medical School Centre for Paediatrics and Adolescent Medicine, Hanover, Germany"
      ],
      "name": "Kathrin Seidemann"
    },
    {
      "affiliations": [
        "Department of Psychocardiology, Department of Developmental Pediatrics, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany",
        "Department for Congenital Heart Disease - Pediatric Cardiology, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany",
        "Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Charité - Universitätsmedizin Berlin, Berlin, Germany"
      ],
      "name": "Lucy Liem"
    },
    {
      "affiliations": [
        "Department for Pediatric Cardiology, Leipzig Heart Centre University Hospital, Leipzig, Germany"
      ],
      "name": "Anna Michaelis"
    },
    {
      "affiliations": [
        "Department of Psychocardiology, Department of Developmental Pediatrics, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany",
        "Department for Congenital Heart Disease - Pediatric Cardiology, Deutsches Herzzentrum der Charité - Charité Campus Virchow-Klinikum Augustenburger Platz, Berlin, Germany",
        "Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Charité - Universitätsmedizin Berlin, Berlin, Germany"
      ],
      "name": "Katharina Schmitt"
    },
    {
      "affiliations": [
        "Department for Pediatric Cardiology, Leipzig Heart Centre University Hospital, Leipzig, Germany"
      ],
      "name": "Michael Weidenbach"
    }
  ],
  "title": "Paediatric Resuscitation Outcome in Children with Heart Disease (ProCHD): protocol of a Germany-wide multicentre, prospective open registry",
  "uid": "65b412eb-01c5-5e8f-a20a-396e6d5b262e"
}