Breaking Down the Barriers of NEC Prevention and Treatment

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PROJECT SUMMARY The goal of the NEC Symposium is to propel the NEC community's ability to improve prevention and treatment options for fragile infants at risk of NEC through patient-centered outcomes research and comparative clinical effectiveness research. The vision for this meeting is to spark new projects, research, and practice changes through multi-disciplinary collaborations that begin to fundamentally improve how vulnerable infants and their families receive care before, during, and after the NEC diagnosis. NEC deserves adequate prioritization of resources and attention, given that it is a catastrophic intestinal disease that can result in sepsis,1 multiple organ failure (including kidneys,2 brain and lungs), short gut syndrome from surgical resections requiring long- term intravenous nutrition with subsequent liver damage,3 and even death. Mortality rates for NEC in the very low birth weight population (<1500 grams) range from 15-42%.4 While premature neonates are the most susceptible, it is impossible to predict which infants will develop NEC and the devastating nature of their disease process. Accordingly, families and clinicians are blindsided and frustrated by the diagnosis of NEC, as tools for early detection and strategies for prevention are non-existent or underdeveloped, with tremendous variation at institutions in feeding approaches, transfusion guidelines, availability of donor milk, or the use of probiotics. Infants that survive the initial onset of NEC often suffer with lifelong neurological and nutritional complications. While the social and emotional costs of NEC to families is immeasurable, the economic costs of NEC are estimated to be approximately $3 billion per year in the U.S.5 The NEC Symposium will begin to address these challenges from this complex disease by convening some of the most committed NEC patient advocates, providers and scientists from around the world. The Symposium is made possible through a partnership between the NEC Society and the University of Michigan’s Section of Pediatric Surgery, with support from an Engagement Award from the Patient-Centered Outcomes Research Institute. The NEC Symposium’s objectives include: 1) propel current and new research projects driven by the NEC Society Research Collaborative through the integration of Symposium sessions and Collaborative research aims; 2) develop a “NEC Prevention Toolkit” for NICUs to support the use of universal best practices regarding NEC prevention, improve NEC-related Patient/Provider Communication, NEC awareness, and Patient-Family decision-making; and 3) build the capacity of the NEC Society Research Collaborative to pursue PCOR/CER priorities. After the NEC Symposium takes place, the NEC Society Research Collaborative, a branch of the NEC Society comprised of 50 multidisciplinary scientists, will carry out the projects and dissemination plans stemming from the meeting. Anticipated outcomes of the NEC Symposium include: 1) drive the development of biomarkers, treatments and interventions; 2) explore the efficacy and effectiveness of treatments and interventions; and 3) implement and disseminate research in centers represented by the NEC Society.