Family-Led Change and Outcomes in Necrotizing Enterocolitis (NEC Society)

Project start and end dates: 2016 – present

Background:
Necrotizing enterocolitis (NEC) is a devastating neonatal inflammatory bowel disease with high mortality. Historically, families were excluded from research prioritization and guideline development.

Objectives:

• Partner with families to identify meaningful outcomes and research priorities
• Improve communication, awareness, and prevention strategies
• Reduce variability in NEC management and outcomes

Research Topics & Methods:

• Family-centered outcomes research
• Survey-based and qualitative studies of parental experience
• Multidisciplinary stakeholder engagement
• National symposia and consensus-building

Implications:
This work reshaped NEC research nationally by embedding family voices into study design, guideline development, and advocacy.

Funders:

• PCORI Engagement Award (conference and research support)
• NICHD R13
• Chan Zuckerberg Initiative (CZI)

Collaborators:
NEC Society Scientific Advisory Council, neonatology, surgery, parent-advocates, and national research partners.

Key Publications:

• Gadepalli SK, Canvasser J, et al. Roles and experiences of parents in NEC. Adv Neonatal Care. 2017. PMID:29166294
• Gadepalli SK, Canvasser J, Good M, Raju TNK. Opportunities for the federal government to advance necrotizing enterocolitis research. Pediatr Res. 2020 Aug;88(Suppl 1):56-59. doi: 10.1038/s41390-020-1081-5. PMID: 32855514.
• Ralls MW, Gadepalli SK, Sylvester KG, Good M. Development of the necrotizing enterocolitis society registry and biorepository. Semin Pediatr Surg. 2018 Feb;27(1):25-28. doi: 10.1053/j.sempedsurg.2017.11.005. Epub 2017 Nov 6. PMID: 29275812; PMCID: PMC5744883.