ADRC Data Freeze Ending 2025-03-31
Description
The Knight Alzheimer Disease Research Center (ADRC) Data Freeze Ending 2025-03-31 is a longitudinal compilation of harmonized, processed research data collected from August 1, 1979 through March 31, 2025. This Data Freeze represents a fixed, versioned snapshot of curated datasets maintained by the ADRC and is intended to support reproducible secondary analyses under approved data use agreements. The Data Freeze includes data contributed by multiple ADRC Cores, including clinical assessments, cognitive testing, neuropsychological measures, neuroimaging data summaries, fluid biomarker data, neuropathology variables, and related research measures. Modules are compiled, quality controlled, and integrated according to ADRC Data Management and Sharing procedures prior to freeze finalization. This dataset reflects the full longitudinal structure of ADRC participant data available as of the official cutoff date (March 31, 2025). No data collected after this date are included in this release. Each subsequent Data Freeze constitutes a new versioned dataset with its own DOI. The purpose of this Data Freeze is to: 1. Provide a stable, citable dataset snapshot for approved secondary analyses 2. Support NIH Data Management and Sharing (DMS) policy compliance 3. Enable transparency, reproducibility, and longitudinal tracking of dataset versions This repository record provides metadata describing the Data Freeze and assigns a persistent DOI to this version. The underlying human subject data are stored in a secure Research Infrastructure Services (RIS) environment and are not publicly downloadable. Access to this dataset is controlled and requires submission of a formal data request through the Knight ADRC Request Center. Approved investigators must complete the appropriate Data Use Agreement prior to receiving access. Upon approval, access to the static dataset corresponding to this DOI will be granted through ADRC-managed secure infrastructure. Investigators using this Data Freeze must cite this dataset DOI in all resulting publications and acknowledge Knight ADRC funding as specified in the Data Use Agreement. This dataset was generated and curated by the Knight ADRC Data Management and Statistics Core in collaboration with contributing ADRC Cores. For information about submitting a data request, please visit: https://knightadrc.wustl.edu/professionals-clinicians/request-center-resources/submit-a-request/
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Steps to reproduce
Data Freeze (DF) datasets are compiled by the Knight ADRC Cores and Projects, each of which generates, curates, and quality-controls its own scientific data elements prior to inclusion in the DF. Before submission to the DF, each Core performs internal data validation procedures, including range checks, coding verification, harmonization of variable definitions, and reconciliation of discrepancies across longitudinal visits when applicable. Each Core provides a data dictionary and documentation describing variables, data collection procedures, coding schemes, and quality control processes. The Data Management and Statistical (DMS) Core integrates these Core-level datasets into a structured Data Freeze package, ensures version consistency, enforces the cutoff date, and prepares the DF for controlled-access distribution. The DF represents a static snapshot of ADRC data collected from August 1, 1979 through March 31, 2025. All data included were finalized and locked as of the cutoff date. Subsequent data entry, corrections, or updates are incorporated into future Data Freezes rather than modifying previously released versions. Representative publications describing data generation methodologies for each Core include: • Biomarker Core: https://doi.org/10.1038/s41380-025-03277-6. Epub 2025 Oct 6. PMID: 41053434; PMCID: PMC12602342. • Biostatistics Core: https://doi.org/10.1177/09622802231215810. Epub 2023 Nov 22. PMID: 37994004; PMCID: PMC10939855. • Clinical Core: https://doi.org/10.1097/01.wad.0000213865.09806.92. PMID: 17132964. • Cognitive Testing Unit: https://doi.org/10.1037/neu0000949. Epub 2024 Apr 11. PMID: 38602816; PMCID: PMC11176005. • Fluid Biomarker Core: https://doi.org/10.1002/ana.26891. Epub 2024 Feb 24. PMID: 38400792; PMCID: PMC11060905. • Genetics Core: https://doi.org/10.1038/s41597-024-03485-9. PMID: 38997326; PMCID: PMC11245521. • Imaging Core: https://doi.org/10.21203/rs.3.rs-7962593/v1. PMID: 41282210; PMCID: PMC12637817. • Neuropathology Core: https://doi.org/10.1002/alz.14253. Epub 2024 Oct 1. PMID: 39351959; PMCID: PMC11567814. • ACS Project 3 (gut microbiome): https://doi.org/10.1126/scitranslmed.abo2984. Epub 2023 Jun 14. PMID: 37315112; PMCID: PMC10680783. • ACS Project 4 (exercise): https://doi.org/10.1002/alz.13400. Epub 2023 Aug 3. PMID: 37534906; PMCID: PMC10592382. • HASD Project 2 (sleep): https://doi.org/10.1002/ana.26641. Epub 2023 Apr 20. PMID: 36897120; PMCID: PMC10330114. • HASD Project 4 (smartphone): https:/doi.org/10.1017/S135561772200042X. Epub 2022 Sep 5. PMID: 36062528; PMCID: PMC9985662.
Institutions
- Washington University in St. LouisMO, Saint Louis
Categories
Funders
Additional Metadata for Digital Commons Data@Becker
| Keywords | Alzheimer Disease, Longitudinal Cohort Study, Mental Status and Dementia Tests, Neuroimaging, Alzheimer Disease Biomarkers, Neuropathology, Genetics, Dementia, Aging, Cognitive Aging, Aged, Memory Disorders, Diagnostic Imaging |