Chronic Kidney Diseases of Uncertain Etiology (CKDu) in Agricultural Communities (CURE) Research Consortium - SDCC

项目概要/摘要 世界上越来越多的地理位置不同的地区报告慢性肾脏病的发病率增加， 病因不确定或未知的疾病（CKDu），一种危及生命的疾病， 慢性肾脏病的危险因素然而，CKDu的病因仍然不清楚，缺乏关于CKDu的数据 进展、生物学表现、遗传决定因素和可能解释区域性疾病的风险因素。 变化.为了应对这些挑战，美国国立卫生研究院（National Institutes of Health）成立了慢性肾脏病研究所（Chronic Kidney 农业社区不确定病因疾病（CKDu）研究联盟。的 联合会将制定一个统一的研究方案，可在多个流行地区实施， 了解CKDu的病因和疾病进展，并确定潜在的治疗靶点， 公共卫生干预。RTI国际和波士顿大学沿着与我们的合作伙伴从哈佛 大学、尼加拉瓜国立自治大学、科罗拉多大学和斯坦福大学， 建议建立CURE研究联盟科学数据协调中心（SDCC）。SDCC 将提供领导力、基础设施和工具，将现场流行病学研究中心、肾脏科学核心、 人类健康暴露分析资源和NIH通过促进建立共识， 和协作决策。SDCC在培养共同研究议程方面的作用对 CURE研究联盟实施伦理流行病学研究设计的能力;共同 数据收集方法以及生物和环境评估;数据分析的最佳做法 和传播;以及辅助研究。具体而言，SDCC将支持研究 联盟通过实现以下目标：（1）阐明CKDu可能的多因素病因 流行区的发展和进展，通过整合经典病例对照研究和纵向研究， 评估病例以评估疾病进展的因素和控制以捕获CKDu发展; (2)通过提供科学领导，促进建立共识，促进合作与协调， 数据科学和强大的分析方法，以及通信，后勤和运营方面的专业知识 支持;（3）通过提供合理的支持，提高联盟的研究效率，生产力和科学严谨性 研究监测和监督，并建立有效的数据和标本管理系统， 相关技术和数据可视化工具。与一个多学科的共同研究小组一起， SDCC多名PI、Jill Lebov博士（联系PI）、玛丽兹博士和丹尼尔布鲁克斯博士将 在联合体协调，项目管理， 流行病学，生物统计学，数据科学，肾脏病学和肾脏疾病研究，环境和 职业健康、遗传学和在资源有限的环境中进行国际研究的道德行为， 有效管理SDCC、CURE研究联盟和CURE研究的活动。

PROJECT SUMMARY/ABSTRACT A growing number of geographically diverse regions around the world report increasing rates of chronic kidney disease of uncertain or unknown etiology (CKDu), a life-threatening condition not attributable to traditional chronic kidney disease risk factors. Yet, the etiology of CKDu remains unclear and data are lacking on CKDu progression, biological manifestations, genetic determinants, and risk factors that may explain regional variations. To address these challenges, the National Institutes of Health has formed the Chronic Kidney Diseases of UnceRtain Etiology (CKDu) in Agricultural Communities (CURE) Research Consortium. The Consortium will develop a harmonized study protocol that can be implemented in multiple endemic regions to understand the etiologies of CKDu and disease progression and to identify potential therapeutic targets and public health interventions. RTI International and Boston University along with our partners from Harvard University, National Autonomous University of Nicaragua, University of Colorado, and Stanford University, propose to establish the CURE Research Consortium Scientific Data Coordinating Center (SDCC). The SDCC will provide the leadership, infrastructure, and tools to unite the Field Epidemiology Sites, Renal Science Core, Human Health Exposure Analysis Resource, and NIH into a cohesive whole by promoting consensus building and collaborative decision making. The SDCC's role in cultivating a common research agenda is crucial to the CURE Research Consortium's ability to implement ethical epidemiology research designs; common approaches for data collection, and biological and environmental assessments; best practices for data analysis and dissemination; and ancillary research studies. Specifically, the SDCC will support the Research Consortium by accomplishing the following aims: (1) elucidate the likely multifactorial etiologies of CKDu development and progression in endemic regions by integrating a classic case-control study with longitudinal assessments of cases to assess factors for disease progression and controls to capture CKDu development; (2) promote consensus building and foster collaboration and coordination by providing scientific leadership, expertise in data science and robust analytical methods, and communication, logistical, and operational support; and (3) enhance Consortium research efficiency, productivity, and scientific rigor by providing sound study monitoring and oversight and establishing efficient data and specimen management systems using relevant technology and data visualization tools. Together with a multidisciplinary team of Co-investigators, the SDCC multiple PIs, Jill Lebov, PhD (contact PI), Marie Gantz, PhD, and Daniel Brooks, PhD, bring the required scientific and organizational capabilities in Consortium coordination, project management, epidemiology, biostatistics, data science, nephrology and kidney disease research, environmental and occupational health, genetics, and ethical conduct of international research in resource-limited settings to effectively manage the activities of the SDCC, the CURE Research Consortium, and the CURE Study.