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 based on a nationally representative sample of 100,000 births. 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 for those who will use the data.
Responsibilities
The DACC is responsible for establishing policies concerning who may have access to Study data, which data may be accessed, and when during the Study data may be accessed. It reviews manuscripts and presentations to assess disclosure risk. The DACC also serves a communication and coordination role among data collection task groups regarding data security issues and is kept apprised of protocol implementation. DACC policies are required to align with NICHD/NIH data sharing and confidentiality principles.
Membership
The DACC chair is NICHD scientist Jennifer Park, PhD, who was appointed by the Study Director. Each of the lead federal agencies in addition to NICHD—NIEHS, CDC, and EPA—has selected a representative to serve on the committee.
DACC Members
Jennifer Park, PhD (Chair)
National Children’s Study Program Office
NICHD, NIH, 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
National Institute of Environmental Health Sciences
National Institutes of Health, HHS
Irva Hertz-Picciotto, Ph.D., 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 Officer
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
References
Report of the Expert Panel on Public Use Data Access and Disclosure Control (April 2008) (PDF 418 KB)
Federal Committee on Statistical Methodology Working Paper 22 (2005)
NIH Data Sharing Policy (February 2003)