Core C: Data Management and Biostatistics

摘要 该数据管理和生物统计核心(DBC)旨在提供高质量的数据管理 基础设施和统计支持，同时利用创新和创造力来改进我们的核心交付 职能交给调查人员。PPG的总体目标是整合基础科学和临床资源 目的探讨FTD的临床、影像、分子和神经病理特点。从历史上看，这个PPG 使用复杂的方法对患者进行表型鉴定，将临床症状和体征联系起来 神经解剖学、遗传学和蛋白质组学特征，以提高FTD的早期和准确诊断。因此， 此PPG的DMB Core有一项特殊的任务，以支持和促进我们的研究人员将 我们收集复杂的、多层次的数据，并以适当复杂的方式处理这些数据 对研究设计和分析方法的建议。在PPG的中心是一个全面的 使用LAVA平台构建的数据库，这是加州大学旧金山分校专门设计的数据管理解决方案，供 综合性临床研究中心。它为管理、临床和研究程序提供支持 共享共同患者队列和评估方案的中央核心和附属项目。自.以来 上一次更新此PPG时，我们还开发了一套基于浏览器的工具，旨在与MAC配合使用 数据，并帮助解决跨PPG生成的复杂、多维数据带来的问题 项目和核心。这个平台被称为KNECT系统(知识网络核心技术)， 包括单个患者的数据集成和跨临床、成像和 遗传模式，以及聚合患者数据的快速数据链接、分析和可视化，以及用于 将表型和遗传数据与结构和静息状态功能磁共振数据相结合。最后，这个核心 旨在为PPG人员提供综合研究设计和生物统计咨询，指导 研究人员以一致的方式处理跨项目和核心的类似问题，使用最高 质量和最可靠的统计方法。因此，这一核心的目标是：目标1：发展和 维护集中、集成的数据管理系统和程序，以确保准确性、 来自PPG核心和项目的管理、临床和研究数据的可用性和保密性。目标 2：为PPG研究人员提供数据集成和分析工具，支持他们有效地 跨核心和项目组合和利用数据以加速发现。目标三：提供高质量的 对所有PPG核心和项目进行生物统计咨询，以便系统地统一和集中研究 设计和统计分析。目标4：促进项目小组之间的研究方法整合和协作 通过高效的数据共享、协调的数据分析计划、 并定期召开会议，讨论研究过程和数据解释。

ABSTRACT This Data Management and Biostatistics Core (DBC) is designed to provide high-quality data management infrastructure and statistical support, while using innovation and creativity to improve the delivery of our core functions to investigators. The overarching goal for the PPG is to integrate basic science and clinical resources to investigate the clinical, imaging, molecular, and neuropathological features of FTD. Historically, this PPG has used sophisticated approaches to phenotyping patients, linking clinical signs and symptoms back to neuroanatomic, genetic, and proteomic signatures to improve early and accurate diagnosis of FTD. Thus, the DMB Core for this PPG has a particular mandate to support and facilitate our researchers' ability to link the complex, multilevel data we collect, and to approach that data with appropriately sophisticated recommendations for research design and analytic methods. At the center of the PPG is a comprehensive database built using the LAVA platform, a data management solution specifically designed at UCSF for use by integrative clinical research centers. It provides support for administrative, clinical and research procedures for central cores and affiliated projects that share common patient cohorts and assessment protocols. Since the last renewal of this PPG, we have also developed a suite of browser-based tools designed to work with MAC data and help solve the problems posed by the complex, multidimensional data generated across PPG projects and cores. This platform, called the KNECT system (Knowledge Network Core Technology), comprises both single-patient data integration and normative interpretation across clinical, imaging, and genetic modalities, and rapid data linking, analysis, and visualization of aggregate patient data, with tools for combining phenotypic and genetic data with structural and resting-state functional MRI data. Finally, this core is designed to provide integrated research design and biostatistical consultation to PPG personnel, guiding researchers to approach similar problems in a consistent manner across projects and cores using the highest quality and most reliable statistical approaches. Thus, the aims of this core are: AIM 1: To develop and maintain centralized, integrated data management systems and procedures that ensure the accuracy, availability, and confidentiality of administrative, clinical, and research data from PPG cores and projects. AIM 2: To provide PPG researchers with data integration and analysis tools supporting their ability to effectively combine and utilize data across cores and projects to accelerate discovery. AIM 3: To provide high-quality biostatistical consultation to all PPG cores and projects in order to systematically unify and focus research design and statistical analysis. AIM 4: To promote research methods integration and collaboration among PPG cores, projects, and related research protocols through efficient data sharing, coordinated data analysis plans, and regular meetings to discuss the research process and data interpretation.