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国家儿童研究档案模型:用于数据和标本的通用传播和二次分析的三层次框架。

The National Children's Study Archive Model: A 3-Tier Framework for Dissemination of Data and Specimens for General Use and Secondary Analysis.

机构信息

Social & Scientific Systems Inc., Silver Spring, MD, United States.

National Institutes of Health, Office of the Director, Bethesda, MD, United States.

出版信息

Front Public Health. 2021 Mar 5;9:526286. doi: 10.3389/fpubh.2021.526286. eCollection 2021.

Abstract

The National Children's Study (NCS) Archive was created as a repository of samples, data, and information from the NCS Vanguard Study-a longitudinal pregnancy and birth cohort evaluating approaches to study influence of environmental exposures on child health and development-to provide qualified researchers with access to NCS materials for use in secondary research. The National Children's Study Archive (NCSA) model is a 3-tiered access model designed to make the wealth of information and materials gathered during the NCS Vanguard Study available at a user appropriate level. The NCSA model was developed as a 3-tier framework, for users of varying access levels, providing intuitive data exploration and visualization tools, an end-to-end data and sample request management system, and a restricted portal for participant-level data access with a team of experts available to assist users. This platform provides a model to accelerate transformation of information and materials from existing studies into new scientific discoveries. ClinicalTrials.gov Identifier: NCT00852904 (first posted February 27, 2009).

摘要

国家儿童研究(NCS)档案库是作为 NCS 先锋队研究的样本、数据和信息的存储库而创建的,这是一项纵向妊娠和出生队列研究,旨在评估环境暴露对儿童健康和发育的影响的研究方法,为合格的研究人员提供访问 NCS 材料的途径,以便用于二次研究。国家儿童研究档案库(NCSA)模型是一个三层访问模型,旨在使 NCS 先锋队研究期间收集的丰富信息和材料在用户适当的级别上可用。NCSA 模型是作为一个具有不同访问级别的三层框架开发的,为用户提供直观的数据探索和可视化工具、端到端的数据和样本请求管理系统,以及一个受限的参与者级别数据访问门户,并配备了一支专家团队为用户提供帮助。该平台提供了一个模型,可将现有研究中的信息和材料加速转化为新的科学发现。

ClinicalTrials.gov 标识符:NCT00852904(首次发布于 2009 年 2 月 27 日)。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/83bd/7973013/b7bb2718f607/fpubh-09-526286-g0001.jpg

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