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A core outcome set for perinatal interventions in congenital diaphragmatic hernia

Thank you for your collaboration on the core outcome set (COS) for perinatal interventions for congenital diaphragmatic hernia (CDH).

As part of the development of this COS, 221international stakeholders participated in an online Delphi survey to select potential core outcomes. During the Consensus Meeting following the 5th ERNICA Annual Meeting in Lille (France), 93 stakeholders eventually agreed on eight core outcomes:

Maternal morbidity

Gestational age at delivery

Intra-uterine death

Interval between intervention and delivery

Lung development in utero

Neonatal mortality

Pulmonary hypertension

Use of extracorporeal membrane oxygenation (ECMO)


In a final Definition meeting, we will discuss how to define and measure each of these outcomes. Aspirational outcomes, which will not be part of the COS yet are recommended to report, will be also discussed. 

We would like to invite you to participate in one of these 1-hour online Definition Meetings. We will offer three options to accommodate for different time zones. Please register for all dates you could participate to such meeting; we will select one out of these.

COS CDH Definition Meeting

The congenital diaphragmatic hernia Core Outcome Set steering group thanks you for your time and consideration!

Jan Deprest, Fetal Medicine, University Hospitals Leuven, Belgium

Simen Vergote, Docotral Researcher, KU Leuven, Leuven, Belgium

Felix De Bie, Doctoral Researcher, KU Leuven, Leuven, Belgium

Jan Bosteels, Centre for Evidence based Medicine, KU Leuven, Belgium

Alexandra Benachi, Fetal Medicine, Hôpital Antoine Béclère, Paris, France

Paolo de Coppi, Pediatric Surgery, Great Ormond Street Hospital for Children, Londen, United Kingdom

Caraciolo Fernandes, Pediatrics, Texas Children's Hospital, Houston, USA

Kevin Lally, Pediatric Surgery, UT Health and Children's Memorial Hermann Hospital, Houston, USA

Holly Hedrick, Pediatric Surgery, Children's Hospital Philadelphia, USA

Irwin Reiss, Neonatology, Erasmus Medical Centre, Rotterdam, The Netherlands

James Duffy, Nuffield Department of Primary Care Health Sciences, Oxford University

Frank Meijer, Platform CHD parent organization, the Netherlands

Beverley Power, CDH UK patient organisation/UK registered charity no 1106065, United Kingdom

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