Information for Researchers
Accessing Utah Cancer Registry Data for Research Purposes
Researchers can perform custom queries of cancer incidence, mortality, and trends in Utah as well as other geographical areas using one of several national or international data sources. Please visit our cancer statistics page for more information.
Researchers who want to obtain a special data set from Utah Cancer Registry, contact potential research participants through Utah Cancer Registry, or link a research data set to Utah Cancer Registry must submit project information for review and approval. Disclosure of data is governed by Utah Cancer Registry policies. Please complete our research pre-application.
Application & Review Process
The application and review process will vary depending on the nature of the project and data requested. If you need summaries such as case counts for research planning purposes, an email is adequate documentation of the request and we can usually respond quickly to these types of requests.
When a researcher requests a record-level data set and/or identifying information, an application and review process is necessary. We suggest the principal investigator meet in-person with our research staff before filling out a full application.
When completing your application or IRB protocol for a study using UCR data be aware that we will look for full documentation of the following: confidentiality, including patient and provider identities; data security, including method of data transmission; data requested are minimum necessary and are justified scientifically; a sound analysis plan. Reviewers of the application for UCR data will consider the request in context of UCR policy for data disclosure.
Please complete and submit the Utah Cancer Registry research pre-application form. We will contact you to set up a meeting to discuss your project, your data request, and the review and approval process.
Publications & Acknowledging Utah Cancer Registry
Researchers obtaining Utah Cancer Registry data will be asked to sign a data use agreement to affirm they will observe appropriate data security measures and that they will protect the confidentiality of individual patients and health care providers.
Researchers who are submitting manuscripts, abstracts, or presentations based on research that included Utah Cancer Registry data should submit the report to the registry for advance review.
Why Do We Review Your Research?
The purpose of the Utah Cancer Registry review is to confirm that:
1) No potentially identifying data are published or presented. This includes suppressing cell counts less than 11, in accordance with the Utah Department of Health’s Data Suppression Guidelines.
2) The Utah Cancer Registry is acknowledged as a data contributor. This acknowledgment should state: "The Utah Cancer Registry is funded by the National Cancer Institute's SEER Program, Contract No. HHSN261201800016I, the US Centers for Disease Control and Prevention's National Program of Cancer Registries, Cooperative Agreement No. NU58DP006320, with additional support from the University of Utah and Huntsman Cancer Foundation.”