ADRC Data Freeze Ending 2026-03-31

The Knight Alzheimer Disease Research Center (ADRC) Data Freeze Ending 2026-03-31 is a longitudinal compilation of harmonized, processed research data collected from August 1, 1979 through March 31, 2026. 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, 2026). 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/

奈特阿尔茨海默病研究中心（Knight Alzheimer Disease Research Center, ADRC）2026年3月31日终止的数据冻结包，是对1979年8月1日至2026年3月31日期间收集的经标准化整合与预处理的研究数据进行的纵向汇编。
本数据冻结包是ADRC维护的精选整理后的数据集的固定版本化快照，旨在支持在获批数据使用协议框架下开展可复现的二次分析。

本数据冻结包包含多个ADRC核心团队贡献的数据，涵盖临床评估、认知测试、神经心理学测评、神经影像数据汇总、体液生物标志物数据、神经病理学变量及相关研究指标。在冻结包最终定稿前，所有数据模块均按照ADRC数据管理与共享规范完成汇编、质量控制与整合工作。

本数据集完整呈现了截至官方截止日期（2026年3月31日）可获取的ADRC受试者数据的纵向结构，本发布版本不包含该日期之后收集的任何数据。后续每一批数据冻结包均为独立的版本化数据集，拥有专属的数字对象标识符（Digital Object Identifier, DOI）。

本数据冻结包的设计目标如下：
1. 为获批的二次分析提供稳定且可引用的数据集快照
2. 支持符合美国国立卫生研究院（National Institutes of Health, NIH）数据管理与共享（Data Management and Sharing, DMS）政策的要求
3. 实现数据集版本的透明化、可复现性与纵向追踪

本存储库记录提供了描述该数据冻结包的元数据（metadata），并为该版本分配了永久数字对象标识符（DOI）。底层的人类受试者数据存储于安全的研究基础设施服务（Research Infrastructure Services, RIS）环境中，不支持公开下载。

本数据集的访问需经过审核，申请人须通过奈特ADRC申请中心提交正式的数据访问申请。获批的研究人员须签署相应的数据使用协议后方可获取访问权限。审核通过后，研究人员可通过ADRC管理的安全基础设施获取与该DOI对应的静态数据集。

使用本数据冻结包的研究人员须在所有产出的学术成果中引用本数据集的DOI，并按照数据使用协议中的要求致谢奈特ADRC的资助。

本数据集由奈特ADRC数据管理与统计核心团队联合各贡献核心团队共同生成并整理。

如需了解数据访问申请的提交流程，请访问：
https://knightadrc.wustl.edu/professionals-clinicians/request-center-resources/submit-a-request/