Developing a prioritized research agenda for necrotizing enterocolitis

Necrotizing enterocolitis (NEC) research priorities informed by a broad group of stakeholders have not been previously determined.

We recruited 11 patient-families and 11 clinician-researchers to develop a prioritized research agenda from 11/19 to 8/22. We identified topics to prioritize through a systematic literature review, analysis of patient stories, and an open-ended survey, and prioritized these in a two-round Delphi process.

We identified and consolidated 157 potential topics from 1754 research articles, 236 patient-family stories, and 10 survey themes, focusing on patient-centered or comparative effectiveness research. The top 6 priorities were: (1) Medications and treatment to prevent NEC; (2) Human milk and lactation support; (3) Tools for diagnosing NEC; (4) Acute management of NEC; (5) Patient-family engagement; (6) Long-term gastrointestinal outcomes.

The top 6 research topics, identified collaboratively through patient-family and clinician-researcher partnerships, should be prioritized by scientists, administrators, funders, policymakers, and others to accelerate research meaningful to NEC stakeholders.