Creating an Interoperability Data Infrastructure for Research on the Aging Lifecourse

摘要： 缺乏连贯、稳定、可发现和可复制结构的数字数据与研究无关 进程。不正确或不充分记录的数据文件代表无意义的数字、没有价值和， 归根结底，是可以丢弃的。过去20年的重大进步之一是越来越多地使用 描述性元数据，促进这些数据的使用和价值，提供更大的可发现性和 初步勘查。这些变化是过去50年来不断演变的过程的一部分，大致 分为四个阶段1)表格纸阶段，2)磁带和主机阶段，3)CD和 个人计算机阶段，以及4)互联网分发阶段。这份申请书认为，广义的 采用数据管理、数据共享和团队科学的最佳实践在第四阶段仍然停滞不前。 数据资源的惊人增长使得获取关于老龄化的个人研究数据变得比 史无前例。不幸的是，有效的数据共享，即使考虑到 如果没有描述共享数据类别的详细元数据链接，就不能完全实现Internet 跨多个数据波或多个相关研究的相关概念、构造和变量。这是第五次 阶段，即互操作性阶段，代表着支持以下老化研究的下一个重要过渡 多学科团队科学。该应用程序的具体目标将推动新兴市场中的数据互操作性 科学领域，促进团队科学和多学科研究。通过组织独立但相关的 将数据收集到统一的结构中，这个应用程序的结果将加速老龄化研究 使用将独立数据集合视为唯一对象的现有集合可以实现的目标。1) 识别--需要在元数据级别对老化数据进行正式编目和结构化。这 流程包括使用“公共数据元素”(CDE)方法的可变级别信息和概念，以 创建跨域的XML/DDI模板以统一跨波的纵向研究。2)整合-将这些联系起来 在健康主题上相互独立的纵向研究，包括阿尔茨海默病和 相关痴呆(ADRD)、认知、与COVID19相关并发症相关的风险，以及 更广泛的健康状况。3)操作性--使数据资源和分析工具可供 研究社区，并为互操作性门户提供持续支持和培训。基于DDI的 跨域集成(CDI)框架将维护集成的数据集合，集成支持 服务、书目跟踪和社交媒体推广。该项目将提供培训和教育 通过会议演示、研讨会和在线网络研讨会提供服务。

Abstract: Digital data that lacks a coherent, stable, discoverable, and reproducible structure is irrelevant to the research process. Improperly or inadequately documented data files represent meaningless numbers, valueless and, ultimately, discardable. One of the significant advances over the past 20 years has been the increased use of descriptive metadata, facilitating the use and value of these data, offering greater discoverability and preliminary exploration. These changes have been part of an evolving process over the past 50 years, roughly categorized into four phases 1) The tabular paper phase, 2) The tape and mainframe phase, 3) The CD and personal computer phase, and 4) The internet distribution phase. This application argues that the broad adoption of best practices for data management, data sharing, and team science remain stalled in Phase 4. The phenomenal growth in data resources has made access to individual research data on aging simpler than ever before. Unfortunately, effective data sharing, even in light of the increased access provided by the Internet, cannot be fully realized without detailed metadata linkages that describe classes of data that share related concepts, constructs, and variables across multiple data waves or multiple related studies. This fifth phase, the interoperability phase, represents the next essential transition to support aging research for multidisciplinary team science. This application's specific goals will advance data interoperability in emerging scientific areas, facilitating team science and multidisciplinary research. By organizing independent but related data collections into a uniform structure, this application's outcomes will accelerate aging research beyond what is achievable using existing collections that treat independent data collections as unique objects. 1) Identify- The universe of aging data needs to be formally cataloged and structured at the metadata level. This process includes variable level information and concepts using a "Common Data Elements" (CDE) approach to create cross-domain XML/DDI templates to unify longitudinal studies across waves. 2) Integrate- Relate these independent longitudinal studies to each other across health thematics, including Alzheimer's disease and related dementias (ADRD), cognitions, risks associated with complications associated with COVID 19, and broader health conditions. 3) Operationalize – Make the data resources and analysis tools available to the research community and provide ongoing support and training for the interoperability portal. A DDI based Cross-Domain Integration (CDI) framework will maintain the integrated data collections, integrate the support services, bibliographic tracking, and social media outreach. The project will provide training and educational services through conference presentations, workshops, and online webinars.