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. 2021 Mar 5:9:526286.
doi: 10.3389/fpubh.2021.526286. eCollection 2021.

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

Peter K Gilbertson  1 , Susan Forrester  1 , Linda Andrews  1 , Kathleen McCann  1 , Lydia Rogers  1 , Christina Park  2 , Jack Moye  3
Affiliations

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

Peter K Gilbertson et al. Front Public Health. .

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. Trial Registration: ClinicalTrials.gov Identifier: NCT00852904 (first posted February 27, 2009).

Keywords: biological specimen bank; child health; data archive; data exploration; data sharing; environmental sample bank; information dissemination; longitudinal studies.

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Conflict of interest statement

PG, SF, LA, KM, and LR were employed by the company Social and Scientific Systems Inc. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

Figure 1
Figure 1
NCS recruitment, enrollment, and study status flow by participant and activity.
Figure 2
Figure 2
NCS participating counties by recruitment strategy across the United States.
Figure 3
Figure 3
NCSA Model Access Tiers.
Figure 4
Figure 4
NCS Protocol Browser.
Figure 5
Figure 5
NCS Archive Instrument Inventory.
Figure 6
Figure 6
NCS Archive Variable Locator.
Figure 7
Figure 7
Participant Explorer for father participants in the IVS phase.
See this image and copyright information in PMC

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