The NEC Society is a nonprofit organization committed to reducing the incidence of neonatal necrotizing enterocolitis, a devastating intestinal disease with high morbidity and mortality rates. The NEC Society Research Collaborative emerged from the groundbreaking 2017 NEC Symposium, and 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 NEC by bringing together multidisciplinary investigators to conduct novel research as one collective team.

Dr. Misty Good, a Neonatologist at Washington University School of Medicine in St. Louis, serves on the NEC Society’s Scientific Advisory Council. In this role, Dr. Good is leading the effort with 25 medical centers in the United States to establish a biorepository of biological samples from infants affected by NEC. The NEC biobank will be a repository of multiple samples including blood, urine, stool, gastric contents, DNA, a breast milk sample (if available), and intestine (if removed) from infants with NEC. The repository will also include 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 the February 2018 issue of Seminars in Pediatric Surgery, as well as the 2017 SIGNEC meeting in the UK. 

Dr. Good believes a NEC biorepository is essential to advancing the science that will lead to the development of novel diagnostic approaches. Such a breakthrough would enable clinicians to identify therapeutic targets to most effectively prevent and treat the disease. The NEC biorepository will serve as an international resource to provide scientists with the necessary samples to aid in their quest to eliminate NEC. The NEC biorepository will provide 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 biorepository at her center and will begin implementation at other participating centers in the coming months.

Please visit the NEC Society’s donate page if you would like to contribute to the NEC Biorepository.

Please email Jennifer@NECsociety.org if you are interested in joining the NEC Society Research Collaborative.