Administrative Supplement to Establish National Exposome Alzheimer's Disease and Related Dementias (ADRD) Infrastructure (Expo-AD)
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The exposome, comprising the variety of life-course exposures and influenced by structural inequities such as systematic racism, is theorized to interact with biological, behavioral, sociocultural, and economic mechanisms as a modifiable factor influencing Alzheimer’s Disease and Related Dementias (ADRD) risk and resilience. The disparities-aligned exposome is optimally linked to biologic health outcomes using participant residential history- - denoted by US privacy law as ‘protected health information’ or PHI and subject to stringent regulation. The complicated legal, administrative, and technical research infrastructure challenges with PHI-data have formed substantial barriers to ADRD-aligned exposome study, leading to a present state in which most national biologic repositories and resources curate only non-PHI data thus prohibiting direct disparities-aligned exposome metric linkage. Due to data security concerns including the substantial cybersecurity risk an institution assumes in storage of PHI-data from outside the home institution, there are no existing resources to link geo-specific exposures to ADRD outcomes on a national scale. Many do not understand the complexity of this task or the effort and expertise required to succeed. To our knowledge, our team is the only ADRD group in the nation already building such infrastructure as part of R01AG070883. The proposed supplement will extend the reach of the parent R01 and remove barriers in exposome science by addressing the infrastructure expansion needed to connect key NIA national data and biorepository resources to PHI-requiring exposome metrics while shielding these NIA research infrastructures from the burden of PHI management. The proposed application for an infrastructure supplement conducted within the scope of the parent R01 is directly responsive to NOT-AG-22- 022 and the Congressional language that led to the allocation of these funds; specifically, to support infrastructure that enables the linkage of life-course exposure factors to biological outcomes, characterized through a mechanistic health disparities lens. Our research group has been leading the field in these approaches, including precision geo-targeting. Our long-term goal is to establish PHI-management research infrastructure to allow for exposome linkage and sharing for non-PHI storing NIA core resources, aligning with and addressing the privacy needs outlined in NOT-AG-22-022. Our specific proposal goal is to build such infrastructure across the 22 ADRCs in R01AG070883, including developing data intake and linkage processes for new exposome metrics (pollution). We will enhance, refine and establish enduring, ethical and community-aligned administrative and legal agreement, process and coordination infrastructure for on-going PHI and exposome data flow intake and non-PHI exposome data outflow; enact data acquisition, intake, linkage and management processes for additional ADRD disparities-aligned exposome metrics (e.g., pollution); develop the Expo-AD data commons for secure integrative exposome research; and implement best practices for ethical sourcing, standardization, quality control, integration and analysis of data in a FAIR, regulatory and privacy compliant manner.
