Accessing Data
Publicly Available Data
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.
Requesting Data Directly from Utah Cancer Registry
Utah Cancer Registry can work with researchers who wish to obtain data, contact potential research participants through Utah Cancer Registry, link a research data set to Utah Cancer Registry data, or have other research-related queries. The first step in the process is for the researcher to submit a research pre-application for review and approval. We will contact you to set up a meeting to discuss your project, your data request, and the review and approval process. Disclosure of data is governed by Utah Cancer Registry policies.
Application & Review Process
The application and review process for obtaining data from Utah Cancer Registry will vary depending on the nature of the project and data requested.
Summary Data
If you need summaries such as case counts for research planning purposes, please fill out our research pre-application. We typically meet with the requestor to discuss the details of the data request. We can usually respond quickly to these types of requests.
Record-level Data
When a researcher requests a record-level data set, with or without identifiers, an application and review process is required. We require a meeting between the principal investigator and our research staff before filling out a full application.
Requests for record-level data from Utah Cancer Registry are reviewed by the Resource for Genetic and Epidemiologic Research (RGE) committee. When completing your application, be aware that we will look for full documentation of the following: measures in place to protect confidentiality, including patient and provider identities; data security, including details of the data storage location and method of data transmission; a detailed description of the data requested and clear scientific justification for their use; and a sound analysis plan. Reviewers of the application for Utah Cancer Registry data will consider the request in context of Utah Cancer Registry policy for data disclosure.
Researchers will be asked to name all members of their study team who will have access to any data from Utah Cancer Registry and to attest to data protections as documented in the following: PI statement of assurances, data security assurances, and a confidentiality agreement.
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, presentations, or press releases based on research that included Utah Cancer Registry data must submit these to the Resource for Genetic and Epidemiologic Research Committee for advance review. The purpose of this review is to confirm that:
- No potentially identifying data are published or presented. This includes suppressing cell counts less than 11, in accordance with the Utah Department of Health and Human Service’s Data Suppression Guidelines
- 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. NU58DP007131, with additional support from the University of Utah and Huntsman Cancer Foundation.” Citing these funding sources is instrumental in helping us track Utah Cancer Registry’s efforts in support of our mission to facilitate cancer research. To see a list of recent publications using Utah Cancer Registry, see our Publications page.