Publicly available, de-identified sources
The following list includes data holders whose archives include publicly available, de-identified data.Review this list and follow the respective links below to learn more about the access and download procedures each data source.
o Agency for Healthcare Research and Quality
o National Medical Expenditure Panel Survey
o American National Election Studies
o National Election Studies
o Inter-University Consortium for Political and Social Research
o ICPSR Archives and Projects (click link to search for archived datasets)
o Radcliffe Institute for Advanced Study
o Murray Research Center
o National Center for Health Statistics
o National Health Care Surveys
o National Health Interview Survey
o National Health and Nutrition Examination Survey
o National Institute on Aging, National Institutes of Health
o Database of Longitudinal Studies
o Virtual Repository of Human Biospecimens
o National Institute of Child Health and Human Development
o NICHD Study of Early Child Care and Youth Development (SECCYD) Public Use Datasets
o National Institute of Justice Data Resources Program
o National Archive of Criminal Justice Data
o National Opinion Research Center
o General Social Survey
o International Social Survey
o National Science Foundation
o Science Resources Studies
o Pennsylvania State University, Department of Sociology
o American Religion Data Archive
o Sociometrics Corporation
o Sociometrics Social Science Electronic Data Library
o Substance Abuse & Mental Health Services Administration
o Children's Mental Health Initiative
o U.S. Department of Education
o National Center for Education Statistics (publicly use sources only)
o U.S. Department of Labor, Bureau of Labor Statistics
o National Longitudinal Surveys
o University of Michigan, Institute for Social Research
o Panel Study of Income Dynamics
o Health and Retirement Study
o University of Minnesota, History Department
o Integrated Public Use Microdata Samples
o University of North Carolina at Chapel Hill, Carolina Population Center
o The National Longitudinal Study of Adolescent Health - public use
o University of Wisconsin-Madison, Center for Demography of Health and Aging
o Wisconsin Longitudinal Study
o U.S. Census Bureau
o American Factfinder
Notes
(1) To obtain pre-approval of other eligible data sets and archives, investigators must submit the following information to the IRB:
· The name of data set or data archive; and
· The URL for the data set/archive or other specific information on how to obtain the data set; and
· An abstract that describes the content and potential uses of the data set/archive.
If the IRB endorses the submission, the data set will be added to the list.
(2) If you are designing a research project that merges more than one public data set and you recognize that this may increase the risk of identification of individual research participants, contact the IRB for advice.
Publicly available but restricted sources
Data holders whose archives are available on arestricted basis will require the submission of an application for Expedited or Full Review. Expedited Review occurs at the sole discretion of the IRB. Examples of such data involve:
· Privately available AND coded data when the investigator and data provider have not established a formal agreement prohibiting the release of identifiers
· Privately available data that the investigator will receive in an identifiable format or that will remain identifiable in the research records.
· Research using identifiable, sensitive information (e.g. info that reasonable persons would not want disclosed)
· Research using sensitive information (e.g., information that reasonable persons would not want disclosed) that is identifiable is not exempt, even when it is publicly available.
Investigators may wish to use the following list as a reference for sources of data sets available on a restricted basis:
· Inter-University Consortium for Political and Social Research
Public and Restricted
· National Center for Health Statistics
Data files through the NCHS Research Data Center (RDC)
· University of North Carolina at Chapel Hill, Carolina Population Center
The National Longitudinal Study of Adolescent Health - restricted
· U.S. Department of Education
National Center for Education Statistics (search for restricted use data)