{"doi":"10.1002/alz.077828","title":"Establishing National Social Exposome Alzheimer’s Disease and Related Dementias (ADRD) Infrastructure","abstract":"<jats:title>Abstract</jats:title><jats:p>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 multi‐site 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 few existing resources to link geo‐specific exposures to ADRD outcomes on a national scale. This project will 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. Our goal is to build infrastructure across the 22 ADRCs in the Neighborhoods Study (R01AG070883), including developing data intake and linkage processes for new exposome metrics. The project is directly responsive to 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. In this presentation we will outline the specific plans to 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; and to enact data acquisition, intake, linkage and management processes for additional ADRD disparities‐aligned exposome metrics (e.g., pollution).</jats:p>","journal":"Alzheimer's &amp; Dementia","year":2023,"id":46305,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":0,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":null,"is_data_producer":false,"deposit_databanks":null,"is_oa":false,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":null,"fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":214950,"name":"Amy J. Kind","orcid":null,"position":0,"is_corresponding":false}],"reference_count":0,"raw_metadata":{"has_enrichment":true,"base_score":0.0,"endowment":0.0,"datacite_reuse_total":0,"file_count":0,"downloads":0,"views":0,"has_version_chain":false,"is_dataset":false,"is_oa":false,"pmid":"31712217","pmcid":null,"openalex_id":"https://openalex.org/W4390201851","authors":[],"funders":[],"total_grants":0,"fwci":0.0,"citation_percentile":0.23799995,"influential_citations":0,"citation_trend":[],"oa_status":"bronze","license":"http://onlinelibrary.wiley.com/termsAndConditions#vor","oa_locations":[{"url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/alz.077828","host_type":"journal"},{"url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/alz.077828","host_type":"BRONZE"},{"url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/alz.077828","host_type":"publisher"},{"url":"https://alz-journals.onlinelibrary.wiley.com/doi/pdf/10.1002/alz.077828","host_type":"publisher"},{"url":"https://doi.org/10.1002/alz.077828","host_type":"journal"}],"fields_of_study":["Health, Environment, Cognitive Aging","Health disparities and outcomes","Nutritional Studies and Diet","Medicine","Environmental Science","Law","Sociology"],"mesh_terms":[],"keywords":["Exposome","Biorepository","Gerontology","Medicine","Biobank","Environmental health","Data science","Computer science","Bioinformatics","Biology"],"sdg_mappings":[{"sdg_number":0,"sdg_label":"Industry, innovation and infrastructure"}],"linked_datasets":[],"clinical_trials":[],"software_tools":[],"database_accessions":[],"source":"live","citation_network_status":"fetched"},"created_at":"2026-07-08T02:26:12.311024Z","pmid":null,"pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}