Developing a prioritized research agenda for necrotizing enterocolitis.

Area of Science:

• Neonatal Research
• Pediatric Gastroenterology
• Clinical Trials

Background:

• Necrotizing enterocolitis (NEC) is a significant concern in neonatal care.
• Establishing research priorities for NEC involving diverse stakeholders is crucial but has not been previously achieved.

Purpose of the Study:

• To collaboratively develop a prioritized research agenda for necrotizing enterocolitis (NEC).
• To identify key research areas that are meaningful to patients, families, and clinicians.

Main Methods:

• A systematic literature review, analysis of patient stories, and an open-ended survey were conducted to identify potential research topics.
• A two-round Delphi process involving 11 patient-families and 11 clinician-researchers was used to prioritize these topics.
• Focus was placed on patient-centered research and comparative effectiveness studies.

Main Results:

• 157 potential research topics were consolidated from literature, patient stories, and surveys.
• The top 6 research priorities for NEC were identified: (1) prevention medications/treatments, (2) human milk/lactation support, (3) diagnostic tools, (4) acute management, (5) patient-family engagement, and (6) long-term gastrointestinal outcomes.
• These priorities emphasize patient-centered and comparative effectiveness research.

Conclusions:

• A collaborative approach involving patient-families and clinician-researchers successfully established top NEC research priorities.
• Prioritizing these 6 key areas is essential for accelerating research that benefits NEC stakeholders.
• Scientists, administrators, funders, and policymakers should align efforts with these identified priorities.