Use of OSCaR's Data in Research
Making cancer data available for cancer prevention and control is the fundamental purpose of the Oregon State Cancer Registry (OSCaR). OSCaR fulfills this purpose by responding to data requests from the media, legislators and policy makers, individual physicians, concerned citizens and collaborative partners and supporting scientific research projects.
Due to confidentiality and data reliability concerns, OSCaR does not release cancer rates or case counts for geographies below the county level or where case counts are less than 11. In these situations, requests require review and approval by the OSCaR Advisory Committee. OSCaR regulations provide more detailed information regarding release of aggregate data; see OAR 333-010-0050 (5).
OSCaR supports scientific research projects aimed at improving the quality of cancer treatment and studies designed to benefit the public's health. Research proposals requesting the use of confidential cancer registry data or cancer data requests involving staff time must be reviewed and approved by the Oregon Public Health Division.
Before any data with confidentiality concerns can be released to researchers, the following steps must be completed.
- Researcher completes and submits an OSCaR research proposal review form along with all required documents.
- OSCaR reviews the documents submitted and follows up with the researcher as needed, including gathering any additional information and documentation necessary.
- OSCaR schedules a review of the research study by the OSCaR Advisory Committee.
- OSCaR Advisory Committee reviews and approves the research study.
- Researcher makes any necessary changes to the study protocol as required by the OSCaR Advisory Committee.
- For requests including confidential data, OSCaR refers the researcher to the Oregon State Public Health Division Institutional Review Board (PHD IRB).
- Researcher completes the PHD IRB Initial Review Questionnaire (IRQ) and submits all required documentation.
- PHD IRB reviews and approves the research study.
- Researcher makes any necessary changes to the study protocol as required by the PHD IRB.
- For requests not including confidential data, but that had confidentiality concerns, the PHD IRB will not be involved unless the OSCaR Advisory Committee requests it be forwarded on to the PHD IRB.
Data use agreement is signed and executed by the researcher and OSCaR.
If patients are to be contacted as part of the research study, the researcher will be responsible for recruiting patients. This includes contacting all patients' physicians to make sure it is appropriate to contact patients, and then contacting the patients to determine if the patients wish to learn more about the study. If both the patients' physician sees no issues and the patient is interested, the researcher may contact the patients directly to discuss the research study. The patients can then determine if they wish to participate in the study. If patients do not wish to be contacted about the research study or any subsequent research study, the researcher must notify OSCaR. These patients will then be placed on a list for exclusion from subsequent research studies.
For questions regarding access to OSCaR cancer data for research and studies, contact OSCaR at firstname.lastname@example.org
CDC-NPCR provides funding and technical support to states, territories and numerous national partners. Support for cancer registries is a line item in the budget from Congress, and these dollars are used to promote the collection of complete, timely and high-quality population-based cancer data for CDC-NPCR.
When data that are collected and reported through support from CDC-NPCR are used for research and publication, acknowledgment of CDC-NPCR in the text is critical. Text like the following sentence should be included: "These data were collected by the Oregon State Cancer Registry participating in the National Program of Cancer Registries (NPCR) of the Centers for Disease Control and Prevention (CDC)."