The NEC Society is a 501(c)(3) nonprofit working to build a world without necrotizing enterocolitis (NEC), a devastating intestinal disease.

The NEC Biorepository is directed by Dr. Misty Good, a neonatologist at the University of North Carolina at Chapel Hill, with support from Dr. Troy Markel, a pediatric surgeon at Indiana University, and Jennifer Canvasser, the NEC Society’s founder and executive director.

The following centers have been approved to participate in the NEC Biorepository:

• University of North Carolina at Chapel Hill, led by Dr. Misty Good
• Indiana University, led by Dr. Troy Markel
• University of Oklahoma, led by Dr. Hala Chaaban
• University of Michigan, led by Dr. Samir Gadepalli
• Nationwide Children’s Hospital, led by Dr. Gail Besner
• Louisiana State University, led by Dr. Sunyoung Kim
• Baylor/Texas Children’s, led by Dr. Amy Hair
• University of Oregon Health Sciences, led by Dr. Brian Scottoline
• University of California at Davis, led by Dr. Steve McElroy

Dr. Good and colleagues are building a robust multicenter biorepository of biological samples from infants affected by NEC. The NEC Biorepository includes samples such as blood, urine, stool, gastric contents, DNA, a breast milk sample (if available), and intestine (if removed) from infants with NEC. The Biorepository also includes specimens from infants that did not develop NEC, yet had intestine removed for other purposes such as a reanastamosis, spontaneous intestinal perforations or volvulus. The development of the NEC Biorepository was featured in Seminars in Pediatric Surgery. 

Recently, Dr. Good and colleagues performed a comprehensive analysis of the transcriptomic and epigenetic signatures in neonatal small and large intestinal epithelial cells during surgical NEC. The epigenetic mechanism they evaluated was DNA methylation where the DNA is modified and affects the function of genes and their expression. Their team found that during severe NEC, there was a significant increase in the DNA methylation in the intestinal epithelial cells, which may be used to diagnose infants with NEC in the future. You can learn more about this work here. 

The NEC Biorepository is essential to advancing the science that will lead to the development of novel diagnostic approaches. Such a breakthrough will enable clinicians to identify therapeutic targets to most effectively prevent and treat the disease. The NEC Biorepository provides an opportunity to facilitate collaborations between multiple centers and expand the available number of patients, biological samples, and corresponding clinical data. The ultimate goal is to develop a biomarker or genetic test to predict a baby’s risk of developing the disease and offer preventive strategies against it. In collaboration with informatic specialists, Dr. Good has developed the clinical and biospecimen databases for the NEC Biorepository to integrate the clinical data and the sample metadata for all of the participating centers.

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

Please email Jennifer@NECsociety.org if you have questions.