The Necrotizing Enterocolitis (NEC) Society has launched the first Research Collaborative focused on advancing the study of neonatal NEC and patient-centered outcomes research. NEC is a devastating intestinal disease that primarily affects medically fragile infants. NEC is infamous for its morbidity and mortality rates that have not significantly improved in over 30 years. The etiology of the disease is not well understood, but is thought to culminate through a trifecta of prematurity, a poorly regulated immune response, and abnormal bacterial colonization of the intestines. 

A father holds his son, who developed necrotizing enterocolitis just hours after this photo was taken

The NEC Society aims to foster cross communication and collaboration through multidisciplinary efforts. Accordingly, the Research Collaborative brings together internationally renowned clinicians, investigators, and family-patient advocates dedicated to reducing the incidence of NEC. Dr. Troy Markel, founding member of the Collaborative, notes that, “Finding a mechanism like the NEC Society to unite the best and brightest NEC researchers in the country is a tremendous accomplishment. As part of a Research Collaborative, we will share research data and tissue samples that would have taken years to collect individually.” Many of the largest pediatric centers in the country are represented in the multi-institution Research Collaborative. The Collaborative convenes 50 distinguished members, including neonatologists, pediatric surgeons, nurse scientists, and patient-families from across the country.  

Members of the Research Collaborative will conduct joint research, thus leading to discoveries that would be unachievable to any one investigator alone. The Research Collaborative will develop new approaches to confronting this complex neonatal disease, as well as foster overall improved, long-term health outcomes for the wider population of premature infants.

The NEC Research Collaborative will address a wide range of challenges related to NEC prevention, treatment, and advancement of knowledge. The Collaborative will first prioritize and confront the following issues related to the care of premature infants in the neonatal intensive care unit (NICU):

• Address the variation in care of premature infants, and the apparent lack of standards of care related to NEC prevention and treatment, including:
  • Antibiotic use
  • Human milk, specifically inequitable access to donor milk and lactation support
  • Probiotic use
  • Blood transfusions
  • Family-centered care

• Develop a standard NEC-reduction Quality Improvement protocol. We know that institutions who undertake an NEC QI project see notable decreases in NEC rates. By providing a readily available and pre-approved NEC-reduction QI program, we will give NICUs the tools they need to reduce the incidence of NEC in their units.

• Develop a unified biorepository that links clinical data with biologic from babies impacted by NEC.

Beyond the goal of preventing necrotizing enterocolitis and driving patient-centered research, the Research Collaborative is also committed to fostering patient-family centered care. The Research Collaborative will prioritize studies, practices, and attitudes that support a NICU culture where families are informed, engaged, and empowered. To support the Collaborative’s various endeavors, the NEC Society engages mainstream organizations, media, and a diverse network of stakeholders who are eager to come together to advance the understanding of necrotizing enterocolitis.

The NEC Society Research Collaborative’s groundbreaking new partnerships will ultimately improve care for our smallest, most fragile babies. For more information on the Collaborative, visit: https://necsociety.org/nec-society-research-collaborative/

The NEC Society is a 501c3 nonprofit organization dedicated to building a world without necrotizing enterocolitis and is led by two mothers who each lost a child to the disease.