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HHS Directory of Health and Human Services Data Resources - Introduction


The HHS Directory of Health and Human Services Data Resources is a compilation of information about virtually all major data collection systems sponsored by the U.S. Department of Health and Human Services (HHS). The Directory was developed under the auspices of the HHS Data Council, which serves as the department's senior internal data policy body and advises the Secretary on a variety of data policy issues. The directory updates and expands upon earlier editions. Additional data systems are included in this update, and more extensive information about each data system is provided, including links to relevant websites.

The Directory of Health and Human Services Data Resources is intended for policymakers, administrators, researchers, and the public as a reference document on data and statistical resources within HHS. This document is available on HHS's home page on the Internet at


The Directory of Health and Human Services Data Resources was designed to include data resources with current utility, or the potential for use by a wide variety of audiences. Databases from continuing departmental data collection projects or program administrative and evaluation activities that met the criterion of broad utility were included in the directory. Such data projects and systems included recurring surveys, public health surveillance systems, disease registries and programmatic data systems sponsored by HHS. Databases from one-time studies or data collections were also included when the data may have broad interest.

Data Availability

In general, data from the systems and projects described in this directory are available in published and aggregate form.  In some cases, public use microdata files are available for research and statistical purposes as well, often subject to data use agreements.  All records in these public use files have been anonymized.  The confidentiality of identifiable information held by HHS agencies is protected by the Privacy Act.  In addition, most of the major research and statistical databases described in this directory are governed by special federal confidentiality statutes, similar to the Census Statutes, that strictly forbid the disclosure of identifiable information.

The table on the following page defines in more detail the headings used for information collection for the Directory of Health and Human Services Data Resources.



TITLE: Title of the data project or system.

ACRONYM: A word formed from the initial letter or letters of each of the successive parts or major parts of the full title.

AGENCY/PROGRAM: Office maintaining or sponsoring the data project/system.

DESCRIPTION: Indicates the purpose of the data project or system, the universe and time period(s) to which the data apply, the sample size, and the data source or collection method.

RACE/ETHNICITY: Categories in the variable in the database used to code race and ethnicity. Subpopulations for a root category, where noted as such, are placed in parentheses following the root category.

DATA LIMITATIONS: Limitations in the use of these data for analysis.

STATUS: A phrase representing the frequency of data collection and present status. For example, the phrase, "This intermittent data collection is inactive," means the data collection was intermittent and has stopped with no plans for future data collection, while the phrase, "This single-time data collection is in process," means the data collection is a one-time study still being conducted.

For projects with repetitive data collection [i.e., periodic, intermittent, continuous], the date of the first data collection expressed as either a single date or a time period, and for inactive projects the date also of the last data collection.

HOW TO ACCESS DATA: Availability of the data; include available data media for public use

Distributor from whom an individual may order available data products is given where applicable.

Individual product names and order numbers that a person would need to use when ordering data products from the project are given where applicable. Product numbers with the prefix "PB" are numbers used for products distributed by the National Technical Information Service, U.S. Department of Commerce. Prices for orders to foreign countries may vary. Prices were applicable at the time of this publication and are subject to change.

WEB SITE: The location address on the Internet where the information can be obtained.

CONTACT PERSON: Contact person for the data project/system from whom an individual can obtain further information on the project/system and data availability.

Last Revised: April 2, 2003