The Data Access and Confidentiality Committee (DACC) is a federal interagency committee that contributed to the initial policies regarding data access and confidentiality for the National Children’s Study.
The Study is a longitudinal and prospective study of children from preconception to age 21. The Study will collect data from mothers, fathers, and children themselves through interviews, direct assessments, biological and environmental specimens, and video collections. The unprecedented wealth of information that will be collected and the Study’s large sample size require an insightful, thorough, and well-communicated plan of data access and confidentiality. This plan needs to be explicit not just for those who will use the data, but also for those who work with the Study but who might not have access to data.
Responsibilities
The DACC is a resource for establishing policies related to who has access to Study data, which data may be accessed, and when data may be accessed, including after the Study’s completion. The DACC is available to review manuscripts and presentations to assess and reduce the risk of disclosure, that is, the direct or indirect identification of Study participants and their families. The DACC policies are required to align with the policies of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH), and other organizations. For more information about the DACC policies and guiding principles, visit the DACC Policy Manual and Data Use Agreements page.
Membership
Each of the lead federal agencies in addition to NICHD—the National Institute of Environmental Health Sciences (NIEHS), the Centers for Disease Control and Prevention (CDC), and the Environmental Protection Agency (EPA)—selected a representative to serve on the DACC. For more information about the guiding principles, visit the Research Publications page.
Founding Members
Jennifer Park, PhD
National Children’s Study Program Office
NICHD, NIH, U.S. Department of Health and Human Services (HHS)
Marion J. Balsam, MD
National Children’s Study Program Office
NICHD, NIH, HHS
Stephen L. Buka, ScD
Providence and Bristol Counties, RI Study Center
Brown University
Adolfo Correa, MD, PhD
National Center on Birth Defects and Developmental Disabilities
CDC, HHS
Elaine A. Cohen Hubal, PhD
National Center for Computational Technology
EPA
Maureen S. Durkin, PhD, DrPH
Waukesha County, WI Vanguard Center
University of Wisconsin, Madison
Jessica E. Graber, PhD
National Children's Study Program Office
NICHD, NIH, HHS
Kimberly Gray, PhD
NIEHS, NIH, HHS
Irva Hertz-Picciotto, PhD, MPH
Sacramento County, CA Study Center
University of California, Davis
Jennifer Madans, PhD
National Center for Health Statistics
CDC, HHS
John Moye, Jr., MD
National Children's Study Program Office
NICHD, NIH, HHS
Leonardo Trasande, MD, MPP
Queens, NY Vanguard Center
Mount Sinai School of Medicine
Robert J. Sokol, MD
Grand Traverse, Lenawee, Macomb, Genesee, and Wayne Counties, MI Study Center
Wayne State University School of Medicine
Nancy Weinfield, PhD
National Children's Study Coordinating Center
Westat