NEC COS Delphi Study - Welcome!

Thank you for participating in this Delphi study aimed at developing a Core Outcome Set (COS) for Necrotizing Enterocolitis (NEC). 

We aim to develop a novel international core outcome set (COS), where we identify a set of the most relevant, measurable, and modifiable outcomes for NEC. This COS will be designed for NEC treatment trials, as opposed to diagnostic or prevention studies, for both physicians as well as patients and parents on an international level, to reduce outcome reporting heterogeneity. Moreover, by involving family representatives, it ensures that further studies are relevant to patients and parents.

You can register in three categories and choose yourself which category you see as best fitting. If you are a family member or former NEC patient, you can register in the lay category. If you work as a physician, nurse or researcher and are involved from the neonatal period onwards (e.g. during the NICU stay and afterwards), you register in the neonatal category. If you work as a physician, nurse or researcher and are involved only after the neonatal period (as a pediatrician only involved in NEC follow up for example), you register in the non-neonatal category. If you work during the neonatal period, and are involved in follow-up afterwards as well, you can register in the neonatal category. 

In the first round, we ask you to score 45 outcomes extracted from existing literature on NEC through a systematic review, to determine the most important outcomes to include in the COS. These outcomes are divided into categories, according to the Taxonomy for Outcomes In Medical Research. All outcomes will be scored on a 9 point Likert scale where 1–3 is considered ‘not important’, 4–6 is considered ‘important but not critical’ and 7–9 is considered ‘critical’. After round 1 you will also be able to add any outcomes that were not mentioned but are important in your opinion. If you are unsure about the meaning of an outcome, hoovering over the outcome will show you a more detailed explanation.

In the second round, you will score the same outcomes and any new ones added after round 1, and you will also be presented with the results of the other participants. In the final round, we will present you the complete set of outcomes, including the answers of all other participants and you can re-score the outcomes one final time. Outcomes that meet previously specified inclusion criteria after the third round will be discussed in an online consensus meeting to form a final core outcome set.

Please be aware that we aim to reduce the current list of outcomes to develop a COS that will include between 8 and 15 outcomes and score the outcomes accordingly.

For the validity of this study, it is important that you fill in all rounds of the survey. Thank you in advance. 

If you have any further questions, you can send an e-mail to Daphne Klerk, neccos@umcg.nl.

Thank you for participating in the NEC COS,

On behalf of the NEC COS steering group,

Daphne Klerk, PhD candidate Neonatology and Pediatric surgery

University of Groningen, The Netherlands

If you have already registered, please click here

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All DelphiManager data is stored on a secure server in the University of Liverpool data centre. For more information please contact delphimg@liverpool.ac.uk