Information for Researchers
"Kentucky Cancer Registry may conduct analyses and studies as are indicated to advance cancer control in the Commonwealth." -KRS 214.556(7)
Registry data contributes to the existing knowledge regarding the burden of cancer in the commonwealth and is used to implement and evaluate cancer control programs. Data from the Kentucky Cancer Registry can also be used for cancer research.
KCR takes very seriously the sensitive nature of the data held in the registry and thus has established procedures designed to enable research while maintaining assurances of confidentiality. In addition, KCR recognizes that complex data elements, such as those involving cancer diagnosis and treatment, require an expert level of technical sophistication to interpret. Therefore, sensitive and confidential data will be released only after assurances are obtained that the data will be analyzed in an epidemiologically competent manner. Epidemiological competence includes, but is not limited to, the researchers' awareness and understanding of the effects of bias that can occur during the processes of data collection, classification and coding, and statistical analysis.
Investigators who wish to use registry data for research purposes must complete the appropriate application for review by the KCR review panel. Each application is reviewed on the basis of the appropriateness and merit of the research question of interest as well as the feasibility of the proposed study. All applications must include assurances that the data will only be used for the purposes of the research described in the application. Additional assurances are required that are specific to the level of data requested and include, but are not limited to, secure storage of confidential data, destruction of data upon project completion, and provision of information regarding staff that will have access to the data. Requests for levels 2 through 4 data require approval from an appropriately constituted institutional review board.
As a public health authority, KCR is not a covered entity as defined by HIPAA legislation (for more information regarding HIPAA and cancer registries, please see NAACCR's FAQ.
KCR recognizes four levels of data that may be used for research purposes. A more detailed explanation of the four levels of data is listed under "Types of Data Available."
