Guidance on Public Use Data Sets

Background

The National Human Subjects Protection Advisory Committee (NHRPAC) approved the recommendations on Public Use Data Files at the January 28-29, 2002 Committee meeting, intended to aid IRBs in review of protocols involving public use data files. The recommendations can be viewed at http://www.hhs.gov/ohrp/archive/nhrpac/documents/dataltr.pdf.

Definition

Public use data files are data files prepared by investigators or data suppliers with the intent of making them available for public use. The data available to the public are not individually identified, are not maintained in a readily identifiable form, or are identifiable without expectation of privacy. The Texas A&M University IRB also includes in this definition: (1) data sets that are available by institutional subscription and include only de-identified data and (2) data sets that are available by institutional subscription and include data that is publicly available yet identifiable without expectation of privacy.

Responsibility of Users of Public Use Data Files

Users of public use data files do not need to submit an IRB application to use such files considering the guidance here and the cases requiring IRB review described below.

Cases Requiring IRB Review

  • Users of three or more public use data files need to submit an IRB application for review and approval. Users of data sets that are available by institutional subscription and include data that is publicly available yet identifiable without expectation of privacy do not need to submit an IRB application irrespective of the number of data sets used.
  • Users seeking to merge public use data files or enhance a public use data file with identifiable or potentially identifiable data need to submit an IRB application for review and approval.
  • Use of restricted data sets requires application to the IRB for review and approval.
  • If submitting a proposal to obtain a data set is required, then an application to the IRB for review and approval is also required.
  • If the research necessitates a request for more information from the database owner, then an application to the IRB for review and approval is also required.
  • If a data use agreement is involved, then an application to the IRB for review and approval is also required.

Inventory of Public Use Data Files

The following list of public use data files has been reviewed by the Texas A&M IRB with the intent of making these data files available for public use. Therefore, no further review by the Texas A&M IRB is required for studies involving these public use data files. If you would like to seek approval of a data set for addition to this inventory, then contact the IRB at irb@tamu.edu for approval of the data set as a public use data file.

 

 

    Public Use Data Sets - De-identified

    Data FileHost InstitutionDate Approved by TAMU IRB
    37 Billion Mile Data Challenge Metropolitan Area Planning Council, the Massachusetts Department of Transportation 3/25/2014
    Academic Excellence Indicator System (AEIS) Texas Education Agency 3/6/2014

    Advanced Cognitive Training for Independent and Vital Elderly, 1999-2001 (ACTIVE)

    University of Michigan

    2/6/2013

    Aging, Status, and Sense of Control (ASOC), 1995, 1998, 2001

    University of Michigan

    2/6/2013

    American National Election Studies (ANES)

    Stanford University and University of Michigan

    1/16/2013

    Backtweets

     

    1/13/2016

    Behavioral Risk Factor Surveillance System (BRFSS)

    Centers for Disease Control and Prevention

    2/6/2013

    Better Access to Data for Global Interdisciplinary Research (BADGIR)

    University of Wisconsin - Madison

    2/6/2013

    Bureau of Economic Analysis

    U.S. Department of Commerce

    4/1/2013

    Bureau of Economic Analysis Regional Data

    U.S. Department of Commerce

    4/1/2013

    Bureau of Labor Statistics

    U.S. Department of Labor

    2/6/2013

    California Health Interview Survey (CHIS)

    University of California at Los Angeles

    2/6/2013

    Census of Agriculture 2007

    U.S. Department of Agriculture

    4/1/2013

    Censuses and Surveys in Ghana

    Chana Statistical Service

    1/13/2015

    Childhood Cancer Survivor Study (CCSS)

    St. Jude Children's Research Hospital

    2/6/2013

    CMS Data Navigator

    Centers for Medicare & Medicaid Services

    2/6/2013

    Collaborative Psychiatric Epidemiology Surveys (CPES)

    University of Michigan

    2/6/2013

    Completion, Graduation, and Dropouts data Texas Education Agency 3/6/2014

    Comprehensive Hospital Abstract Reporting System (CHARS)

    Washington State Department of Health

    2/6/2013

    Consumer Panel Data

    The University of Chicago

    5/5/2016

    Cornell Institute for Social and Economic Research (CISER)

    Cornell University

    2/6/2013

    Demographic Health Survey (DHS), Standard and Interim Surveys

    Measure DHS

    2/6/2013

    District Type Data Search

    Texas Education Administration

    4/1/2013
    Economic Data Federal Reserve Bank of St. Louis (FRED) 8/28/2014

    Established Populations for Epidemiologic Studies of the Elderly (EPESE)

    University of Michigan

    2/6/2013

    Fatality Analysis Reporting System (FARS)

    National Highway Traffic Safety Administration

    2/6/2013

    Financial Allocation Study for Texas (FAST) Texas Comptroller of Public Accounts 3/6/2014
    Food Surveys USDA

    2/6/2013

    FoodAPS National Household Food Acquisition and Purchase Survey

    USDA

    5/5/2016

    Fragile Families and Child Well Being Study

     Princeton University

     7/13/2016

    General Social Survey

    University of Chicago

    2/6/2013

    German Socio-Economic Panel Survey

    European University Institute

    2/6/2013

    Global Entrepreneurship Monitor (GEM) 

    GEM Consortium

    8/12/2015

    Harvard - MIT Data Center (HMDC)

    Harvard University

    2/6/2013

    Health And Retirement Survey (HRS)

    University of Michigan

    2/6/2013

    Health Information National Trends Survey (HINTS)

    National Cancer Institute

    2/6/2013

    Healthcare Cost and Utilization Project (HCUP)

    Agency for Healthcare Research and Quality

    2/6/2013

    Hispanic Established Populations for Epidemiologic Studies of the Elderly (H-EPESE)

    University of Michigan

    2/6/2013

    HIV Prevention Trials Network D01: Vaccine Preparedness Study/Uninfected Protocol Cohort – 4 files

    HIV Prevention Trials Network

    2/6/2013

    Hospital Compare

    U.S. Department of Health and Human Services

    2/6/2013

    Human Sketch Attributes

    Public Use Creative Commons

    10/20/2015

    Institut National de la Statistique du Cameroun

    Institut National de la Statistique du Cameroun

    11/18/2013

    Integrated Public Use Microdata Samples (IPUMS)

    University of Minnesota

    2/6/2013

    Inter-University Consoritum for Political and Social Research (ICPSR)

    University of Michigan

    1/16/2013

    Listening to Mothers III

    University of North Carolina

    5/25/2016

    LSOAs:  Longitudinal Studies of Aging

    Centers for Disease Control and Prevention

    2/6/2013

    Medical Expenditure Panel Survey (MEPS)

    Agency for Healthcare Research and Quality

    2/6/2013

    Mexican National Household Expenditure Survey Mexico 5/20/2014

    Medicare Healthcare Cost Report Information System (HCRIS)

    2/6/2013

    Midlife in the United States (MIDUS)

    University of Wisconsin - Madison

    2/6/2013

    National Agricultural Statistics Service

    U.S. Department of Agriculture

    4/1/2013

    National Archive of Criminal Justice Data (NACJD)

    University of Michigan

    2/6/2013

    National Automotive Sampling System (NASS)

    National Highway Traffic Safety Administration

    2/6/2013

    National Center for Education Statistics

    U.S. Department of Education

    1/16/2013

    National Center for Biotechnology Information

    National Center for Biotechnology Information

    10/2/2013

    National Center for Health Statistics

    Centers for Disease Control and Prevention

    1/16/2013

    National Child Development Study

    Universities of Essex and Manchester

    2/6/2013

    National Food and Nutrition (NATFAN) Questionnaire - WIC Food Package Revisions

    Texas A&M AgriLife

    6/10/2015

    National Health and Nutrition Examination Survey (NHANES)

    Centers for Disease Control and Prevention

    2/6/2013

    National Health Interview Survey (NHIS)

    Centers for Disease Control and Prevention

    2/6/2013

    National Hospital Ambulatory Medical Care Survey (NHAMCS)

    Centers for Disease Control and Prevention

    2/6/2013

    National Household Travel Survey U.S. Department of Transportation 4/12/2013

    National Long Term Care Survey

    Duke University

    2/6/2013

    National Longitudinal Study of Adolescent to Adult Health (Add Health)

    UNC Carolina Population Center and NIH

    5/7/2015

    National Mortality Followback Survey (NMFA)

    Centers for Disease Control and Prevention

    2/6/2013

    National Nursing Home Survey (NNHS)

    Centers for Disease Control and Prevention

    2/6/2013

    National Survey of America’s Families (NSAF)

    Urban Institute

    7/13/2016

    National Survey of Children with Special Health Care Needs (NS- CSHCN)

    The Child and Adolescent Health Measurement Initiative

    2/6/2013

    National Survey of Children’s Health (NSCH)

    The Child and Adolescent Health Measurement Initiative

    2/6/2013

    National Survey on Drug Use and Health, 2002-2010

    Research Triangle Institute

    2/6/2013

    National Youth Survey, Wave I to Wave VII

    University of Michigan

    2/6/2013

    National Health Care Surveys (NHCS)

    Centers for Disease Control and Prevention

    2/6/2013

    National Immunization Survey (NIS)

    Centers for Disease Control and Prevention

    2/6/2013

    National Vital Statistics System

    Centers for Disease Control and Prevention

    2/6/2013

    NSFG:  National Survey of Family Growth

    Centers for Disease Control and Prevention

    2/6/2013

    Next Generation Simulation (NGSIM) program

    US DOT

    2/17/2015

    Open Data

    Texas Comptroller of Public Accounts

    4/1/2013

    Organ Procurement and Transplantation Network (OPTN)

    U.S. Department of Health and Human Services

    2/6/2013

    Overview of Texas Taxes

    Texas Comptroller of Public Accounts

    4/1/2013

    Panel Study of Income Dynamics (PSID)

    University of Michigan

    2/6/2013

    Physical Fitness Assessment Initiative (PFAI) 

    Texas Education Agency 12/8/2015
    PhysioBank Archive Index NIH, NIBIB, NIGMS 2/27/2014

    Pinterest (publicly available only; must seek IRB approval for research involving information available through sign-in)

    7/3/2014

    Progress in International Reading Literacy Survey (PIRLS)

    Boston College

    2/6/2013

    Project STAR and Beyond

    Harvard

    1/19/2016

    Quarterly Sales Tax Historical Data

    Texas Comptroller of Public Accounts

    4/1/2013
    reddit (publicly available only; must seek IRB approval for research involving information available through sign-in) 7/3/2014
    regulations.gov Regulations.gov 5/23/2014

    Reports and Data

    Texas Education Agency

    4/1/2013

    School Finance Reports and Data

    Texas Education Agency

    4/1/2013

    Social Science Data Archive

    University of California at Los Angeles

    2/6/2013

    Special Education Elementary Longitudinal Study (SEELS)

    Office of Special Education Programs (OSEP) in the U.S. Department of Education

    1/26/2016

    State & Local Area Integrated Telephone Survey (SLAITS)

    Centers for Disease Control and Prevention

    2/6/2013

    Survey of Consumer Finances (SCF)

    Federal Reserve

    2/6/2013

    Survey of Consumers (SCA)

    University of Michigan

    2/6/2013

    Survey of Older Americans (2004)

    The Commonwealth Fund

    2/6/2013

    Tax Exemptions and Tax Incidence

    Texas Comptroller of Public Accounts

    4/1/2013

    Tax Rates and Levies by County

    Texas Comptroller of Public Accounts

    4/1/2013

    Texas Academic Performance Reports (TAPR) Texas Education Agency 1/26/2016
    Texas Education Directory (askTED) Texas Education Agency 3/6/2014

    Texas Education Agency Reports and Data

    Texas Education Agency

    1/26/2016

    Texas Finances and Economic Development

    Texas Comptroller of Public Accounts

    4/1/2013

    Texas School Survey of Drug and Alcohol Use

    Texas Department of State Health Services (DSHS)

    11/4/2013

    The Cancer Genome Atlas (TCGA)

    National Institutes of Health

    12/2/2014

    The Luxembourg Income Study (LIS)

    LIS

    2/6/2013

    The Roper Center for Public Opinion Research

    University of Connecticut

    2/6/2013

    tumblr (publicly available only; must seek IRB approval for research involving information available through sign-in) 3/10/2016
    Twitter (publicly available only; must seek IRB approval for research involving information available through sign-in) 7/3/2014

    University of Wisconsin-Madison Data and Information Services Center (DISC)

    University of Wisconsin - Madison

    2/6/2013

    U.S. Census Bureau

    U.S. Department of Commerce

    1/16/2013

    West Nile Centers for Disease Control and Prevention 6/5/2014
    Where the Money Comes From

    Texas Comptroller of Public Accounts

    4/1/2013
    Where the Money Goes

    Texas Comptroller of Public Accounts

    4/1/2013
    Wisconsin Breast Cancer Dataset UCI Machine Learning Repository 3/6/2015
    WomanSTATS Project 9/22/2014

    World Governance Indicators

    World Bank

    8/12/2015

    Youth Risk Behavior Surveillance System (YRBSS)

    Centers for Disease Control and Prevention

    2/6/2013

    Public Use Data Sets - Identifiable Without Expectation of Privacy

    A. Datasets available to anyone at TAMU through the Library.

    Datafile

    Host

    Date Approved by the TAMU IRB

    BoardEx BoardEx 10/1/2015
    Directory of Corporate Affiliations

    LexisNexis

    10/1/2015
    Thomson One

    Thomson Reuters

    10/1/2015

    B. Datasets available through Wharton Research Data Services (WRDS) – these are subscription based datasets all located through WRDS  (https://wrds-web.wharton.upenn.edu/wrds/index.cfm?)

    • Compustat
    • Execucomp
    • Institutional Shareholder Services
    • GMI Ratings
    • AuditAnalytics
    • Thomson Reuters
    • Blockholders

    C.  Datasets available through a subscription but NOT through WRDS:

    ISS Incentive Lab

    Description of dataset here:  http://www.isscorporatesolutions.com/iss-incentive-lab

     D.  EDGAR (http://www.sec.gov/edgar.shtml) and DirectEDGAR