The NEC Society, an organization that aims to eliminate necrotizing enterocolitis (NEC), received $250,000 from the Patient-Centered Outcomes Research Institute (PCORI) to build its research capacity. The organization will partner with UC Davis Health’s Center for Healthcare Policy and Research to achieve key goals in its two-year project.

Mark Underwood
Mark Underwood

“The NEC Society is a unique organization led by parents who lost babies to this devastating disease,” said Mark Underwood, chief of the Division of Neonatology at UC Davis Children’s Hospital. Underwood is a member of the society’s scientific advisory board. “This is indeed an exciting partnership.”

NEC is a destructive intestinal disease that primarily affects premature infants, causing an inflammatory process that can lead to tissue damage and death. In the U.S., more than 4,000 premature infants are diagnosed with NEC every year; one-third will die from the disease.

The PCORI award will advance the NEC Society’s ability to drive research and serve as a model for others studying rare neonatal diseases.

The NEC Society’s project is titled “Building Capacity for PCOR/CER in the Neonatal NEC Community.” The Center for Healthcare Policy and Research team at UC Davis Health will help achieve the following objectives:

• Create and train a dedicated leadership team consisting of patient-families and clinician-researchers
• Develop methods and strategies to identify and prioritize research
• Establish a model framework that can be shared with and used by others

“The impact of this partnership will be fewer deaths and less long-term disease among very preterm infants,” said Underwood. “Not just in Northern California, but across the world.”