Building the Infrastructure for BLSA Data Management, Documentation, and Sharing (Alzheimer's Disease Concept)

该项目支持一个由一名团队领导和两名员工组成的 BLSA 数据管理团队。团队负责人向 BLSA 领导层、NIA IT 团队和 LBN 汇报。 1) 团队领导处于监督级别，负责所有 BLSA 数据系统的设计、实施和监控，并协调研究者、工作人员和数据管理部门之间有关 BLSA 数据需求的沟通。此人在人类研究方面经验丰富，在研究信息系统方面接受过高级培训，在人员监督以及口头和书面沟通方面拥有熟练的技能。 2) 数据管理器与 NIA 外部的研究人员进行交互，以支持改进 BLSA 和 LBN（领导 BLSA 关于认知和痴呆症的研究）之间的电子通信链接，实现数据合并和当前碎片数据的链接，包括遗传学、代谢组学、大量独立执行的分析和成像研究，以及实施进一步的数据质量和跟踪活动。 3) BLSA 技术实验室经理负责更新、记录和管理广泛的 BLSA 数据字典，并作为联系人（例如，服务台人员）处理有关 BLSA 数据使用的外部询问，并准备和更新 BLSA MOP 和数据字典的材料。 该项目还支持专用服务器来托管所有这些活动，并有足够的容量来存储至少未来 10 年所需的数据。 该项目已经进行了约 2.5 年，在更新 BLSA 数据基础设施方面取得了实质性进展。特别是，跨多个系统的数据摄取管道已被修改和简化。已实施持续的质量保证和控制流程。数据管理正在多个领域进行：将 BLSA 工作人员的临床和研究知识与数据科学团队的专业知识相结合，以定义算法并生成有助于数据共享的文档。内部和外部数据系统访问接口的试点测试已经开始，BLSA 现已出现在公共数据平台上，例如阿尔茨海默病数据倡议的阿尔茨海默病工作台。 预计在项目的下一阶段将继续构建数据系统接口以及对更广泛的最终用户进行试点测试。

This project supports a BLSA data management team with a team leader and two staff. The team leader reports BLSA leadership, the NIA IT team and LBN. 1) The Team Leader is at the supervisory level and responsible for the design, implementation and monitoring of all BLSA data systems, and for coordinating communications regarding BLSA data needs among investigators, staff and the data management unit. This individual is experienced with human studies research, advanced training in information systems for research and skilled in personnel oversight as well as oral and written communications. 2) The data manager interfaces with investigators outside NIA, for supporting improved electronic communication links between BLSA and LBN (which leads BLSA research on cognition and dementia), for implementing data merges and linking of currently fragmented data, including genetics, metabolomics, numerous independently performed assays and imaging studies and for implementing further data quality and tracking activities. 3) The BLSA Technical Laboratory Manager is responsible for the update, documentation and management of the extensive BLSA Data Dictionary and serves as the contact person (e.g., mans the Help Desk), for outside inquiries regarding use of BLSA data and prepares and updates materials for the BLSA MOP and Data Dictionary. This project also supports a dedicated server that hosts all these activities and has enough capacity to store the necessary data for at least the next 10 years. This project has been underway for about 2.5 years and has made substantial progress on updating the BLSA data infrastructure. In particular, the pipelines for data ingestion across multiple systems have been revised and streamlined. A process of continuing quality assurance and control has been implemented. Data curation is ongoing in several areas: integrating the clinical and research knowledge of BLSA staff with the expertise of the data science team to define algorithms and produce documentation that will facilitate data sharing. Pilot testing of interfaces for internal and external data system access has begun and the BLSA is now represented on public data platforms such as the Alzheimers Disease Workbench of the Alzheimer's Disease Data Initiative. Continued buildout of the data system interfaces as well as pilot testing with a broader range of end users is anticipated in the next stages of the project.