The NEC Biorepository

6 February 2018

It was a pleasure to attend another meeting of the Special Interest Group in Necrotizing Enterocolitis last October, and in one of my presentations I spoke about the challenges and opportunities of biobanking. The availability of high quality neonatal biological samples plays a critical role in accelerating the outcomes of translational research studies, and a NEC biorepository is essential to advance the state of the science, to develop novel diagnostic approaches and to identify therapeutic targets to prevent and/or treat the disease.

Meeting the research needs in NEC will be unachievable by a single biobank due to additional and unique barriers compared to other disease-specific biobanks. These barriers include fewer NEC investigators, difficulty obtaining samples due to emergent operative decisions, and limitations in sample volume. So, as part of my role on the Scientific Advisory Council of the Necrotizing Enterocolitis (NEC) Society, I am leading an effort with 25 medical centers in the United States to establish a biorepository of biological samples from infants affected by NEC. Several centers are currently collecting intestine and stool samples, and to a lesser extent blood and urine, but they rarely collect gastric aspirates, saliva and maternal breast milk. 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, but also infants that did not develop NEC and/or who had intestine removed for other purposes such as a reanastamosis, spontaneous intestinal perforations or volvulus.

Misty Good, MD, MS

Misty Good, MD, MS

Assistant Professor of Pediatrics

Washington University School of Medicine
Division of Newborn Medicine
St Louis Children’s Hospital

The purpose of the NEC biorepository is to develop an international resource to provide scientists with the necessary samples to aid in their quest to eliminate NEC. It will provide an opportunity to facilitate collaborations between multiple centers within and outside the United States, and it will expand the available number of patients, biological samples and corresponding clinical data. Samples will be virtually combined by uploading the information into a shared database, REDCap, which is a secure web application designed to support data capture for research studies. It is free, allows users to build and manage online databases quickly and securely, and many centers are already using it.

The ultimate goal is to develop a biomarker or genetic test to predict a baby’s risk of contracting necrotizing enterocolitis and to offer preventive strategies against it. In collaboration with informatic specialists, I have developed the clinical and biospecimen databases for the biorepository at my center and we are rolling it out to other centers very soon.


It is the hope of all involved in the NEC Society Biorepository that we can improve, facilitate, and accelerate basic and clinical/translational studies of NEC, and that in future we can help all infants and families affected by this devastating disease.

If you would like to see slides from the presentation I gave at the last SIGNEC meeting, you can download them using the button below and you can also read more about project in this paper, which was published in the February 2018 issue of Seminars in Pediatric Surgery. For updates on my work, follow me on Twitter or please visit my lab website. If you would like to help fund the project, you can donate to the NEC Society. Thank you!

Biobanking for NEC: Challenges and opportunities

Previous blogs

Conquering NEC, step by step

Dr Minesh Khashu
Special Interest Group in Necrotizing Enterocolitis