NEC Society Research Collaborative


The NEC Society Research Collaborative propels NEC research that matters to patient-families. The Research Collaborative convenes multidisciplinary investigators who are committed to conducting NEC research as one collective team. Click here to learn more about the Research Collaborative.

Active Projects:

The NEC Society has received an Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) to support the organization’s two-year research capacity building project. This PCORI award will advance the NEC Society’s ability to drive patient-centered outcomes research (PCOR) and comparative-effectiveness research (CER) that matters to patient-families impacted by necrotizing enterocolitis (NEC), while also serving as a model for other neonatal rare disease communities.

The effort to build the NEC biorepository began at the NEC Symposium. Participating centers from the Research Collaborative collect and share biological samples from infants affected by NEC, as well as infants who did not experience NEC. The goal is to develop biomarkers to predict a baby’s risk of contracting the disease and offer preventive strategies against it.

  • National Benchmarking Tool for NICUs

The goal of this benchmarking database is to collect center-specific data and patient-specific data as a way to analyze the variation of care and compliance to protocols. The Research Collaborative hopes to use this information to develop recommended standards of care. The framework for this project has been developed and the Collaborative will soon start to collect data. 

  • Comparative Effectiveness Research with Families in the NICU

Currently, most research within NICUs requires parents to “opt-in” to participate. This project explores an “opt-out” research model, where de-identified data would be available for researchers to use unless parents opt-out. We want to understand the ethical and practical implications of this model where families passively agree to participate in research. The vision is to create a model where critical research needs can be addressed efficiently and with compassion for the trauma that families in the NICU experience.

NEC Society Research Collaborative Members

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