Breaking Down the Barriers of NEC Prevention and Treatment

打破 NEC 预防和治疗的障碍

• 批准号: 9757967
• 负责人: Samir Kumar Gadepalli
• 金额: $ 1万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-04-01 至 2020-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9757967
• 关键词: Address; Advocate; Affect; Attention; Award; Awareness; Benchmarking; Biological Markers; Brain; Caring; Cessation of life; Clinical; Clinical Research; Clinical Trials; Clinical effectiveness; Cognitive; Collaborations; Communities; Community Hospitals; Complex; Decision Making; Diagnosis; Disease; Early Diagnosis; Educational workshop; Emotional; Excision; Family; Goals; Guidelines; Infant; Institution; Institutional Practice; Interdisciplinary Study; Intervention; Intestinal Diseases; Intravenous; Journals; Kidney; Lead; Lung; Measures; Medical; Michigan; Modeling; Multiple Organ Failure; Nature; Necrotizing Enterocolitis; Neurologic; Nutritional; Operative Surgical Procedures; Outcome; Outcomes Research; Parents; Pathway interactions; Patient-Focused Outcomes; Patients; Pediatric Research; Pediatric Surgical Procedures; Population; Prevention; Prevention strategy; Probiotics; Process; Provider; Psychosocial Assessment and Care; Publishing; Qi; Research; Research Institute; Research Personnel; Research Project Grants; Resources; Risk; Sampling; Scientist; Sepsis; Short Bowel Syndrome; Societies; Standardization; Transfusion; Translating; Translational Research; Treatment Effectiveness; Universities; Variant; Very Low Birth Weight Infant; Vision; Voice; biobank; biomarker development; clinical application; clinical development; comparative; comparative effectiveness; cost; dissemination research; donor milk; economic cost; effectiveness research; efficacy testing; feeding; high risk infant; implementation research; improved; insight; interdisciplinary collaboration; liver injury; meetings; mortality; multidisciplinary; novel; novel strategies; novel therapeutics; nutrition; patient-clinician communication; premature neonates; program dissemination; research data dissemination; social; social media; stem; success; symposium; systems research; tool

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.

项目摘要 NEC研讨会的目标是推动NEC社区改善预防和治疗的能力 通过以患者为中心的结果研究和比较临床的脆弱婴儿的脆弱婴儿的选择 有效研究。这次会议的愿景是激发新的项目，研究和实践变化 通过多学科的合作，从根本上开始改善脆弱的婴儿及其如何 家庭在NEC诊断之前，期间和之后都受到护理。 NEC值得获得足够的优先级 资源和关注，鉴于它是一种灾难性的肠道疾病，可能导致败血症，1个多重 器官衰竭（包括肾脏，2个大脑和肺），需要长长的手术衰退的短肠综合征 术语静脉营养和随后的肝脏损伤，3甚至死亡。 NEC的死亡率 低出生体重（<1500克）的范围为15-42％.4，而早产新生儿最多 易感性，无法预测哪些婴儿会发展出NEC及其毁灭性的本质 疾病过程。彼此之间，家庭和临床医生对NEC的诊断盲目和沮丧 早期检测和预防策略的工具是不存在的或不发达的， 喂养方法，输血指南，供体牛奶的可用性或使用的机构变化 益生菌。 NEC初始发作的婴儿经常患有终身神经和营养 并发症。虽然NEC对家庭的社会和情感成本是不可估量的，但经济成本的经济成本 NEC估计在美国每年约30亿美元，NEC研讨会将开始 通过召集一些最致力的NEC患者来应对这种复杂疾病的挑战 来自世界各地的拥护者，提供者和科学家。通过 NEC学会与密歇根大学的小儿外科部门之间的伙伴关系，与 以患者为中心的结果研究所获得的互动奖。 NEC 研讨会的目标包括：1）推动NEC社会驱动的当前和新研究项目 通过整合研讨会和协作研究的目的来研究合作； 2） 为NICUS开发一个“ NEC预防工具包”，以支持对NEC的通用最佳实践的使用 预防，改善NEC相关的患者/提供者的沟通，NEC意识和患者家庭 决策; 3）建立NEC协会研究合作的能力购买PCOR/CER 优先事项。 NEC研讨会发生后，NEC协会研究合作阶段， NEC协会完成了50位跨学科科学家，将执行项目和传播计划 来自会议。 NEC研讨会的预期结果包括：1）推动开发 生物标志物，治疗和干预措施； 2）探索治疗的有效性和有效性 干预措施； 3）在NEC社会代表的中心中实施和传播研究。