Breaking Down the Barriers of NEC Prevention and Treatment

项目摘要 NEC研讨会的目标是推动NEC社区提高预防和治疗的能力 通过以患者为中心的结局研究和比较临床研究， 有效性研究。这次会议的愿景是激发新的项目，研究和实践变化 通过多学科合作，开始从根本上改善脆弱的婴儿和他们的 家庭在NEC诊断之前，期间和之后接受护理。全国选举委员会应适当优先考虑 资源和关注，鉴于它是一种灾难性的肠道疾病，可导致败血症，1多 器官衰竭（包括肾脏、2个大脑和肺），需要长时间手术切除的短肠综合征， 长期静脉营养，随后肝损伤，3甚至死亡。2000年NEC死亡率 低出生体重人口（<1 500克）占15- 42%。 由于易受感染，因此无法预测哪些婴儿会发展NEC以及其破坏性的性质。 疾病过程。因此，家庭和临床医生对NEC的诊断感到盲目和沮丧， 早期检测工具和预防战略不存在或发展不足， 机构在喂养方法、输血指南、供体乳汁的可用性或使用 益生菌在NEC最初发作后存活的婴儿通常会终身遭受神经和营养不良的困扰。 并发症虽然NEC给家庭带来的社会和情感代价是不可估量的，但 据估计，NEC每年在美国的销售额约为30亿美元。5 NEC研讨会将开始， 通过召集一些最坚定的NEC患者， 来自世界各地的倡导者、供应商和科学家。研讨会是通过一个 NEC协会和密歇根大学儿科外科部门之间的伙伴关系， 来自以患者为中心的成果研究所的参与奖的支持。国家选举委员会 研讨会的目标包括：1）推动NEC协会推动的当前和新的研究项目 通过研讨会会议和合作研究目标的整合进行研究合作; 2） 为新生儿重症监护病房开发“NEC预防工具包”，以支持使用NEC方面的通用最佳实践 预防，改善NEC相关的患者/提供者沟通，NEC意识和患者家庭 3）建设NEC社会研究协作机构开展变革和组织振兴方案/核证的排减量的能力 优先事项NEC研讨会举行后，NEC社会研究合作，一个分支， NEC协会由50名多学科科学家组成，将执行项目和传播计划 从会议中产生的。NEC研讨会的预期成果包括：1）推动 生物标志物、治疗和干预; 2）探索治疗的功效和有效性， 干预措施;和3）实施和传播NEC协会为代表的中心的研究。

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.