The NEC Society is a 501(c)(3) nonprofit organization committed to building a world without necrotizing enterocolitis (NEC), a devastating intestinal disease that primarily affects premature and medically fragile babies.
The NEC Society Biorepository is directed by Dr. Misty Good, a neonatologist at Washington University, with support from Dr. Troy Markel, a pediatric surgeon at Indiana University, and Jennifer Canvasser, who provides the patient-family perspective.
Dr. Good is leading the effort with 25 medical centers to build a robust biorepository of biological samples from infants affected by NEC. The NEC Biobank is 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 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, as well as the SIGNEC meeting in the UK.
Dr. Good believes 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 serves as an international resource to provide scientists with the necessary samples to aid in their quest to eliminate NEC. 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 Society Biorepository to integrate the clinical data and the sample metadata for all of the participating centers.
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 from 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.
Please visit the NEC Society’s donate page if you would like to support the NEC Biorepository.
Please email Jennifer@NECsociety.org if you have questions or are interested in joining the NEC Society Research Collaborative.