The goal of the biorepository (biobank) is to help fragile newborn babies by improving our understanding of the disease necrotizing enterocolitis (NEC).

A biorepository is a research facility that collects and stores biological samples for research. Our biorepository holds samples from numerous medical centers across the country. Researchers share the samples, making it easier to study NEC.

The biorepository collects samples of blood, stool, urine, saliva, and stomach fluid from babies in the NICU. It also collects breast milk samples from the birthing parent. If a baby in the NICU has intestinal surgery for NEC or any other condition, intestinal tissue that would have otherwise been discarded is saved for the biorepository.

Two types of babies are eligible to participate: 1. Babies who are in the NICU and have developed NEC, and 2. Babies who are the same age as another baby who has developed NEC. Only babies at NEC Biorepository centers can participate.

The NEC Biorepository is funded by the National Institutes of Health, the Chan Zuckerberg Initiative, and the NEC Society.

The biorepository may be used for many scientific research projects. One project underway is the creation of a single-cell atlas of the human neonatal intestine. A single-cell atlas includes detailed information about individual cells and how these cells are different in healthy intestine compared to during NEC.

This project is one of five funded (from hundreds of applicants) by the Chan Zuckerberg Initiative (CZI) for Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease.

The single-cell atlas will allow us to better understand the mechanisms that regulate important aspects of cellular differentiation, gut development, inflammation, disease progression, and resolution during and after NEC. Understanding the pathways involved in the pathobiology of NEC will shed light on why medically fragile infants are uniquely susceptible to NEC.

The project is intended to collect and analyze samples for four years. Research findings will be published as the project progresses (first publication anticipated for 2024).

This research will lead to better care for infants and their families in the neonatal intensive care unit (NICU), thus improving outcomes and saving lives.

Family Resource Boxes

Patient-family education and support is an integral part of the single-cell atlas project. CZI has provided funding for family resource boxes for those newly diagnosed with NEC, or who tragically recently lost a baby to NEC. These boxes have been designed by families contain up-to-date information about NEC and resources to empower, educate, and support. Request a family resource box here.

Misty Good, MD, MS

The NEC Biorepository is directed by Dr. Good, Division Chief, Neonatal-Perinatal Medicine and Associate Professor of Pediatrics University of North Carolina at Chapel Hill. Dr. Good leads all coordination efforts with Biorepository Centers and the NEC Society.

Dr. Good says, “The NEC Biorepository was started to build collaboration between scientists across the country. I strongly believe that building a world without NEC requires the dedicated commitment of a community of scientific investigators, families, and clinicians.”

Interested in having your center join the NEC Biorepository? Email Dr. Good: 

You can support the NEC Biorepository by making a donation to the NEC Society