Background: Research is needed to understand the impact of the exposome on ADRD, and development of a secure research infrastructure that facilitates linkage of exposome metrics to biological outcomes is critical. Such linkages are challenging because they often require working with protected health information (PHI) covered under the Health Insurance Portability and Accountability Act (HIPAA). In response, we have developed a robust administrative, legal, and cybersecurity infrastructure at the University of Wisconsin (UW) to establish a novel, PHI-capable, multi-site service for exposome data linkage for the ADRD research community: "Expo-AD".
Method: Expo-AD is a scalable, cloud-based environment created and maintained by UW. Data sharing agreements with 22 academic institutions and a specially designed and carefully curated cybersecurity platform provide a secure, PHI-compliant computing environment. Expo-AD utilizes cloud-based virtual machines (VMs) to ensure isolation of sensitive PHI, maintaining HIPAA compliance and preventing unauthorized access. Data transfer leverages Globus, a research cyberinfrastructure used to reliably and securely share data across institutions. VMs provide a scalable resource which is crucial for managing large datasets and adjusting computational power as needed in exposome research. They also provide disaster recovery capabilities which ensure minimal disruption and safeguard data over time. Access is controlled through both technical and procedural methods and overseen by an external advisory committee RESULTS: Expo-AD is currently storing personal identifiers and neuropathology data of 10,875 brain donors acquired from 22 participating brain banks and the National Alzheimer's Coordinating Center. Residential addresses are geocoded and linked to the Area Deprivation Index to characterize the exposome. Curated data will be released through Globus after each data freeze to requesting researchers. Life course residential history construction for brain donor cases is ongoing.
Conclusion: Expo-AD is one of the largest multi-site infrastructures designed specifically to enhance life course exposome intake and linkage to biological ADRD data. Its design facilitates future broad scale sharing of deidentified exposome metrics to non-PHI capable research resources. Expo-AD holds the promise of expanding exposome data access across the ADRD field, bringing benefits to the research community and catalyzing collaborative and reproducible exposome research.
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http://dx.doi.org/10.1002/alz.095640 | DOI Listing |
J Am Med Inform Assoc
January 2025
Coordinating Center, Observational Health Data Science and Informatics, New York City, NY 10032, United States.
Objective: Propose a framework to empirically evaluate and report validity of findings from observational studies using pre-specified objective diagnostics, increasing trust in real-world evidence (RWE).
Materials And Methods: The framework employs objective diagnostic measures to assess the appropriateness of study designs, analytic assumptions, and threats to validity in generating reliable evidence addressing causal questions. Diagnostic evaluations should be interpreted before the unblinding of study results or, alternatively, only unblind results from analyses that pass pre-specified thresholds.
BMC Rheumatol
January 2025
Montefiore Medical Center, Albert Einstein College of Medicine, Rheumatology, Bronx, NY, USA.
Background: The anti-melanoma differentiation-associated gene 5 (anti-MDA5) antibody-positive dermatomyositis is known for its association with rapidly progressive interstitial lung disease (RP-ILD) and ulcerative skin lesions, often presenting with or without muscle involvement. The aim of this study was to identify distinct clinical and laboratory features that could be used to evaluate disease progression in an ethnically diverse cohort of anti-MDA5 dermatomyositis patients at a U.S.
View Article and Find Full Text PDFHereditas
January 2025
Obstetrics and Gynecology Medical Centre, The First Affiliated Hospital of Hunan University of Traditional Chinese Medicine, No.105, Shaoshan Middle Road, Yuhua District, Changsha, 410007, Hunan, China.
Background: Cervical cancer (CC) is a prevalent gynecological malignancy, contributing to a substantial number of fatalities among women. MicroRNAs (miRNAs) have emerged as promising biomarkers with significant potential for the early detection and prognosis of CC.
Objective: This study aimed to explore the clinical significance and biological role of miR-615-5p in CC, with the goal of identifying novel biomarkers for this disease.
J Anim Sci Biotechnol
January 2025
College of Animal Science and Technology, Northeast Agricultural University, Harbin, 150030, People's Republic of China.
Background: The objective of this study was to evaluate the effects of dietary fatty acids (FA) saturation and lysophospholipids supplementation on growth, meat quality, oxidative stability, FA profiles, and lipid metabolism of finishing beef bulls. Thirty-two Angus bulls (initial body weight: 623 ± 22.6 kg; 21 ± 0.
View Article and Find Full Text PDFJ Pharm Health Care Sci
January 2025
Department of Pharmacology and Clinical Pharmacy, School of Pharmacy, College of Health Science, Addis Ababa University, Addis Ababa, Ethiopia.
Background: Antithrombotic medications are essential for the management of abnormal clot formation. However, their availability, pricing, and affordability in Ethiopia, particularly in Addis Ababa, have not been comprehensively studied.
Methods: A cross-sectional study was conducted in Addis Ababa, Ethiopia to assess the availability, pricing, and affordability of essential antithrombotic medicines.
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