The Data Access and Confidentiality Committee (DACC) is a federal interagency committee that establishes 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 sample will be a statistically valid population that will permit both generalizations about the nation as a whole and detailed analysis of specific communities and subpopulations. 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
DACC is responsible 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. DACC reviews manuscripts and presentations to assess and reduce the risk of disclosure, that is, the direct or indirect identification of Study participants and their families. Because DACC also serves communication and coordination roles among data-collection task groups to address and find solutions for data security issues, its members are kept apprised of protocol implementation. 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.
Membership
NICHD scientist Jennifer Park, PhD, was appointed by the National Children’s Study Director to chair DACC. 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)—has selected a representative to serve on DACC.
Members
Jennifer Park, PhD (Chair)
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
DACC Policy Manual and Data Use Agreements