ALZHEIMER'S RESEARCH PROJECT: Building the Infrastructure for BLSA Data Management, Documentation, and Sharing

National Institute On Aging

Investigators

Abstract

This project supports a BLSA data management team with a team leader and two staff. The team leader reports to 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 6.5 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. The BLSA is now represented on public data platforms including the Alzheimer’s Disease Workbench of the Alzheimer’s Disease Data Initiative, the Global Alzheimer's Association Interactive Network, as well as the Image and Data Archive at the USC Laboratory of Neuro Imaging. The internal data system interface is now in use by a broad range of internal investigators. The data science team continues to develop specific features in response to user feedback and the discontinuation of legacy data management methods is ongoing. The transition of processes for routine data system updates to the NIA IT Clinical Computing group has begun and a plan for long term data system maintenance has been outlined. The BLSA data team continues to provide training on the use of the data system and regularly disseminates information to NIA IRP groups as well as external research groups.