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Activity Number: 513
Type: Topic Contributed
Date/Time: Wednesday, August 5, 2009 : 2:00 PM to 3:50 PM
Sponsor: Section on Government Statistics
Abstract - #303730
Title: Data Access for the National Children's Study: Preliminary Plans
Author(s): Jennifer Park*+
Companies: National Institute of Child Health and Human Development
Address: 6100 Executive Boulevard, Bethesda, MD, 20892-7510,
Keywords: Data access ; Genetic data ; NCS ; Disclosure risk ; National Children's Study ; Environmental data
Abstract:

The National Children's Study (NCS) is designed to investigate the effects of environmental exposures and gene-environment interactions on pregnancy outcomes, child health and development, and precursors of adult disease. Of particular interest are precursors to rare disorders, such as autism. This longitudinal cohort study uses a multicenter collection design to follow a nationally representative sample of approximately 100,000 children born in the United States. Children will be followed pre-conceptually until age 21. Environmental samples, bio-specimens, family history, ultrasounds and medical records, images, and direct assessment of health and development will be collected. This unprecedented array of sensitive and personally identifiable data requires an innovative, comprehensive, and evolving data access plan. Preliminary data access policies and procedures will be presented.

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