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

Author:

Gilbertson Peter K.,Forrester Susan,Andrews Linda,McCann Kathleen,Rogers Lydia,Park Christina,Moye Jack

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).

Funder

National Institutes of Health

Publisher

Frontiers Media SA

Subject

Public Health, Environmental and Occupational Health

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