Registration to participate in the development of a core outcome set (COS) for perinatal interventions for congenital diaphragmatic hernia (CDH).
Thank you for your interest in this study. By registering, you help us by joining the stakeholders who will participate in a three-round online Delphi survey during which you will rank outcomes based on their relevance.
By providing your email address you express your willingness to be part of the stakeholders. We will contact you at the moment the survey is launched (end of 2020).
How do we store data?
When registering as a potential stakeholder, you will be allocated a unique identifier, which does not include information that can identify the participant (name, address or telephone number), for further participation to the Delphi survey. Only the primary investigator and his team, who are bound to confidentiality, can link the unique identifier to the contact information of the participants in order to chase them to complete the survey. Any information that can be used to identify the participant, will be stored securely at the University Hospitals Leuven on a securely password-protected computer and a secured server. The data will be deleted at the start of the Delphi survey by the person collecting the data. If you want to be removed from the list earlier, please email simen.vergote@uzleuven.be or the principal investigator jan.deprest@uzleuven.be .
What is the data used for?
We ask you to register your email address, so we can invite you to the Delphi survey (end of 2020). You will receive detailed study information on what basis you will be asked to provide informed consent. Only thereafter, the actual Delphi survey starts. Your data will NOT be shared with third parties for any other reason than stated above, unless we seek express permission first.
Registration
The study entitled: “A core outcome set for perinatal interventions for diaphragmatic hernia” is registered as S63767 at the Ethics Committee Research UZ/KU Leuven and under B3222020000010 at the Federal Agency for Medicines and Health Products. Participants can withdraw at any point in time from this survey. The development of this COS is registered in the COMET-initiative (1269).
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, Doctoral Researcher, KU Leuven, Leuven, Belgium
Felix Debie, Doctoral Researcher, Children’s Hospital Philadelphia, USA
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, London, 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