Access to UCR Data
The Utah Cancer Registry routinely publishes incidence and mortality statistics on this website and provides cancer case information to individuals, researchers, and other state and national organizations. State and national data sources include the Utah Department of Health-IBIS Query System, SEER Program at the NCI, and the North American Association of Central Cancer Registries (NAACCR).
For questions about data linkages or accessing aggregate or de-identified UCR data, please contact Kim Herget at firstname.lastname@example.org
For questions regarding patient contact studies, please contact Susan VanRoosendaal at email@example.com
- Access Aggregate (Summary) Data
- Access Individual Patient Data
- Patient Contact Studies
- Data Linkage Studies
- Types of Data Available
- Publishing Study Results (Acknowledgement)
To obtain non-identifiable cancer statistics such as cancer counts and incidence, mortality, and survival rates: Click here for more information.Return to Top
Identifiable cancer case information includes information that identifies the cancer patient either from the data disclosed or in combination with other data. These data may include, but are not limited to: the patient's name, date of birth, social security number, address, telephone number, sex, and age. The UCR may only release a cancer patient's identifiable information under the following conditions:
- A notarized Request for Confidential Cancer Record Form is completed by the cancer patient (if alive), her/his next-of-kin (if deceased), legal guardian, or power of attorney. The summary information released is based on the patient's abstracted medical record. If a confidential cancer record is needed in connection with the Radiation Exposure Compensation Program, please go to www.usdoj.gov/civil/torts/const/reca for more information or contact the Department of Justice at 1-800-729-7327.
- A researcher who submits a signed release from the cancer patient, her/his legal guardian, or her/his next-of-kin (if the patient is deceased).
- For a research project that has been approved by the UCR Advisory Research Committee and a human subjects review committee such as the University of Utah Institutional Review Board (IRB), the researcher (Principal Investigator) must show that the identifiable cancer case information is required for the research project. In addition, the researcher must follow the policies and procedures set forth in the UCR's Policies and Procedures Guide: Requests for Registry Data.
- A researcher employed with the Utah Department of Health and for whom identifiable cancer case information is necessary to inform public health policy.
- Institutions and physicians providing data to the UCR. Cancer information, however, will be limited to information on cases reported by their own institution or practice.
- UCR may provide identifiable cancer case information to a biomedical research resource if the resource meets the conditions of Exhibit A: Section 2, Exchange of Data Between Research Resources (See the UCR's Policies and Procedures Guide: Requests for Registry Data for more information).
- For continuing research studies, UCR requires an annual report, along with updated IRB and RGE approvals. Additionally, the UCR requires confidentiality pledges and CITI training certification for all study personal. When closing a research study, the researcher must submit a final report to the UCR.
If researchers wish to contact individuals identified through the UCR, the researcher must submit a written request directly to UCR and obtain approval for the study. UCR will obtain the individual's written consent to release her/his contact information to the researcher. When the UCR receives approval by the individual, the UCR will forward her/his contact information to the researcher for study recruitment.
Researchers considering a patient contact study need to complete the following forms and return them to Susan VanRoosendaal (firstname.lastname@example.org) at UCR, obtain Institutional Review Board (IRB) and UCR Advisory Research Committee (ARC) approval in order to begin a patient contact study. Contact Susan with any questions about the process.
- Procedure Checklist
- UCR Research Agreement
- UCR Research Proposal
- UCR Data Request for Confidential Data
- UCR Patient Contact Data Items
- UCR Confidentiality Pledge
- Sample of Patient Contact Letter
- Sample of Next-of-Kin Contact Letter
- Sample of Permission Form
The UCR also offers record-linking services for research projects that do not involve patient contact and only require record linking with other data sources. If the Research Project has the patient's informed consent, then linkage projects will be administratively reviewed by the Director or designee. However, ARC review and approval will be required if the Research Project does not have the patient's informed consent. Record-linking projects must submit all the forms required for requests that involve identifiable cancer case information, including the:
- Procedure Checklist
- Data Request for Patient Identifiable Data
- UCR Research Proposal
- Research Agreement
- Confidentiality Pledge
- UCR Data Items for Data Linkages
The UCR collects a number of data items to assist cancer programs at local institutions meet their requirements for American College of Surgeons accreditation, to assist UCR in case-finding and report generation, and to meet Utah Department of Health or NAACCR requirements. It is the policy of UCR that certain data elements are not released under any circumstances.
The UCR requires that all researchers submit a copy of manuscripts, abstracts, or presentations that are generated using UCR data. The UCR does not review these documents for scientific merit or content. Instead, the UCR simply reviews the document to ensure that (1) no patient identifiable data are published or presented and (2) the UCR is acknowledged as a data contributor. The acknowledgment should state that "Research was supported by the Utah Cancer Registry, which is funded by Contract No. HHSN261201000026C from the National Cancer Institute's SEER Program with additional support from the Utah State Department of Health and the University of Utah".Return to Top