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

National Institute On Aging

Investigators

Linked publications, trials & patents

Abstract

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.