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Background <p>Necrotizing enterocolitis (NEC) research priorities informed by a broad group of stakeholders have not been previously determined.</p> Methods <p>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.</p> Results <p>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.</p> Conclusions <p>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.</p>

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Developing a prioritized research agenda for necrotizing enterocolitis

  • 期刊论文

  • 发表日期：

    2026年7月1日

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  • Ravi Mangal Patel,
  • Allison T. Rose,
  • Stacey Neves,
  • Rebeca Giacinto,
  • Susan Perez,
  • Jae Kim,
  • Camilia R. Martin,
  • Misty Good,
  • Toby Yanowitz,
  • Jochen Profit,
  • Brian Scottoline,
  • Troy A. Markel,
  • Marie Spruce,
  • Amy Hair,
  • Mark Underwood,
  • Jenny Quinn,
  • Simone Rosito,
  • Erin Pryor,
  • Lelis Vernon,
  • Amena Mebane,
  • Linseigh Green,
  • Erin Umberger,
  • Jennifer Canvasser

摘要

Background

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

Methods

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.

Results

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.

Conclusions

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.