General Considerations

Introduction:

The Comprehensive Epidemiologic Data Resource (CEDR) Program is an effort of the U.S. Department of Energy (DOE) to broaden access to its health studies data and other related information to other scientists, as well as members of the public. The CEDR information system, located at Oak Ridge Institute for Science and Education (ORISE), is an electronic data repository that provides access to dose reconstruction, area monitoring, community health studies, epidemiologic surveillance data, and the DOE Former Worker Program.

Protection of Individual Identity:

CEDR requires that data on human subjects be de-identified. Epidemiologic data typically contain information that uniquely identifies individuals (e.g., date of birth) who were subjects in the study. Such data can only be used under rigorous legal and statutory controls and a system of extensive protocol and other institutional reviews.

To provide easier access to epidemiologic data overall, CEDR excludes identifying information that might incur regulatory burden. That is, CEDR does not include data that directly identifies individuals by name, social security number, badge number, specific birth or death dates, or specific job hire or termination dates.

CEDR policy requires that that these types of data be redacted by the provider prior to submission to CEDR.

CEDR Identification Numbers:

To protect the privacy of individuals included in CEDR data, a unique identification number must be assigned to each individual, thus eliminating the need for personal identifiers. By doing this, an individual can be located in multiple files and studies because the same identification number is used consistently throughout.

Data providers submitting files on a particular individual to CEDR must create a unique identification number in the data to identify that individual, as personal identifiers are not allowed.

Next: What do I de-identify?