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:

This Probiotic QI Project will help us to better understand outcomes for babies who receive probiotics as part of their care in the NICU. Participating units that choose to use probiotics will measure babies’ growth and share that data with us. The collective data will then be analyzed to determine if babies who received probiotics have different outcomes than those who did not. The NEC Society engaged in discussions with the FDA to ensure this QI project aligned with their regulatory framework. This project was developed directly from the 2017 NEC Symposium and is now enrolling centers.

The effort to build the NEC biorepository began at the 2017 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.

Support the NEC Society Research Collaborative

Resulting from the 2017 NEC Symposium’s success, the NEC Society Research Collaborative has grown to include nearly 50 investigators from around the world, including many of the United States’ largest pediatric centers. The Research Collaborative strives to improve the prevention and treatment of necrotizing enterocolitis by bringing together multidisciplinary investigators to conduct novel research as one collective team. The Research Collaborative utilizes the patient-family voice in the development, implementation, and analysis of its projects. Thank you for supporting this work!


NEC Society Research Collaborative Members

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