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

项目摘要/摘要 世界各地越来越多的地理位置不同的地区报告说，慢性肾脏的发病率正在上升。 不明或不明病因的疾病(CKDu)，一种威胁生命的疾病，不能归因于传统的 慢性肾脏疾病的危险因素。然而，CKDu的病因尚不清楚，关于CKDu的数据也很缺乏 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 变种。为了应对这些挑战，美国国立卫生研究院成立了慢性肾脏 农业社区(治愈)研究联盟中的不明原因疾病(CKDu)。这个 该联盟将制定一项统一的研究方案，可在多个流行地区实施，以 了解CKDU的病因和疾病进展，并确定潜在的治疗靶点和 公共卫生干预。RTI国际公司和波士顿大学以及我们来自哈佛的合作伙伴 尼加拉瓜国立自治大学、科罗拉多大学和斯坦福大学， 建议建立治愈研究联盟科学数据协调中心(SDCC)。国家发改委 将提供领导、基础设施和工具，以联合现场流行病学网站、肾脏科学核心、 人类健康暴露分析资源，和NIH通过促进共识建立一个凝聚力的整体 和协作决策。国家发改委在制定共同研究议程方面的作用对 治愈研究联盟实施伦理流行病学研究设计的能力；常见 数据收集以及生物和环境评估的方法.数据分析的最佳做法 和传播；以及辅助研究研究。具体来说，国家发展研究中心将支持这项研究 通过实现以下目标：(1)阐明CKDU可能的多因素病因 将经典病例对照研究与纵向病例对照研究相结合研究流行区的发展和进展 对病例进行评估，以评估疾病进展的因素，并采取控制措施，以捕捉CKDU的发展； (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、物流和运营方面的专业知识 支持；以及(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、监测和监督以及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。与一个由多学科联合调查员组成的团队一起， SDCC多位PI、Jill Lebov博士(联系PI)、Marie Gantz博士和Daniel Brooks博士带来 在联合体协调、项目管理、 流行病学、生物统计学、数据科学、肾病学和肾脏疾病研究、环境和 在资源有限的环境中进行国际研究的职业健康、遗传学和伦理行为 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.