Improving the usage and impact of the Integrated Aging Studies Databank and Registry

项目摘要 老年综合研究数据库和注册库(IASDR)是一个专为 在美国国立卫生研究院资助的全美老年独立网络中共享数据 中心(OAIC)。IASDR由OAIC协调中心(CC)主办和维护。 作为特定于域的存储库，现有的IASDR包含从 在维克森林OAIC(WF-OAIC)以及一家生物谱库进行的老龄化研究 以获取从所包括的一些研究中收集的样本。因此，《国际会计准则》是一项有价值的 为老龄化研究社区提供的资源，特别是为早期职业教师提供的资源。数据 存储库适合希望进行小规模试点研究以进行测试的早期职业研究人员 猜想和研究假设，并有效地产生有用的信息，如 用于拨款申请或为未来研究提供支持的初步效果大小。确定了差距 当IASDR根据现代存储库要求进行评估时。IASDR是第一个 开始于十多年前，开发过程并不一定严格 坚持当代生物医学数据仓库原则，如公平和信任 原则。重要的是，用户在访问用于决策的关键信息方面存在障碍 支持。例如，目前汇总的统计数据，如平均值、标准差、频次 对于变量和变量之间的关联信息，这通常是帮助 IASDR元数据中不存在用户决定是否追求实际数据的问题。 缺乏这样的初步信息可能会阻止感兴趣的用户使用该存储库。 为解决《国际会计准则》在“公平”和“信任”方面的差距和局限性-- 这项建议包含两个具体目标：(1)通过以下方式加强元数据层 为用户提供关键的分析信息，如平均值、频率和关联度 在变量之间，和(2)完善IASDR，遵循公平和信任原则，寻求 认证。

Project Summary The Integrated Aging Studies Databank and Registry (IASDR) is a repository designed for sharing data across the NIH-funded national network of Older Americans Independence Centers (OAICs). The IASDR hosted and maintained by the OAIC’s Coordinating Center (CC). As a domain-specific repository, the existing IASDR contains multiple data sets generated from aging studies conducted at the Wake Forest OAIC (WF-OAIC), as well as a biospecimen bank for samples collected from some of the included studies. The IASDR thus serves as a valuable resource for the aging research community, especially for early career faculty. The data repository befits early career investigators who want to conduct small pilot studies for testing out conjectures and research hypotheses, and to efficiently produce useful information such as preliminary effect sizes for grant applications or to power future studies. Gaps were identified when the IASDR was evaluated against modern repository requirements. The IASDR was first started more than a decade ago, and the development process did not necessarily strictly adhere to contemporary biomedical-data repository principles such as the FAIR and TRUST principles. Importantly, barriers are present for users in accessing key information for decision support. For example, currently summary statistics such as mean, standard deviation, frequency for variables and association information between variables, which are often critical in helping users to decide whether or not to pursue actual data, are not present in the IASDR metadata. The lack of such preliminary information could deter interested users from using the repository. To address gaps and limitations of the IASDR as related to its “FAIR”-ness and “TRUST”- worthiness, this proposal contains two specific aims: (1) Enhance the metadata layer by providing users with key analytic information such as mean, frequency, and association between variables, and (2) improve the IASDR along the FAIR and TRUST principles and seek certification.