This data system contains individual tumor level cases of cancers among all Oregon residents starting in 1996 to the present.
A statewide, population-based cancer registry collects cases of reportable cancer [Cancer Reporting Regulations: Oregon Administrative Rules] occurring in a defined population (i.e., Oregon residents). In August 1995, the Oregon Legislature unanimously passed legislation making cancer a reportable disease. Reporting began January 1, 1996. All invasive malignant neoplasms, except basal and squamous cell carcinoma of the skin are reportable in the state of Oregon. Additionally, all in-situ carcinomas, except carcinoma in-situ of the cervix uteri, and basal and squamous cell carcinoma in-situ of the skin are reportable. Information processed by OSCaR comes from a variety of sources including hospital cancer registries, state cancer registries, ambulatory surgical centers, physician offices, vital statistics, pathology laboratories, hospital medical record departments, and the US Census. Approximately 75% of Oregon’s cancer cases are collected by established hospital cancer registries and are reported to OSCaR. The statewide, population-based cancer registry collects the remaining 25% from non-registry hospitals, outpatient clinics, physician offices, and neighboring state registries diagnosing or treating Oregon residents.
As of time period end date
The value of the Registry depends upon having accurate, individually identifiable information. Only cancer related information is collected. The following is part of each OSCaR record: -Patient name, address, age, sex -Type/characteristics of the cancer -Details of the diagnosis -Treatment given
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Data from OSCaR provide an overview of all cancers diagnosed in Oregon. This information is useful for cancer prevention programs, clinicians, policy makers, and the public for understanding the impact of cancer among Oregonians. In addition, OSCaR is a source of data for researchers who are conducting their own studies into the causes and/or treatment of specific types of cancers. OSCaR provides accurate cancer data for public health policy-making and epidemiological research and investigation efforts related to cancer control efforts. OSCaR also provides surveillance of cancers addressed by cancer prevention or early detection programs for targeting and evaluating control and tracks cancer incidence and treatment trends in Oregon. Finally, OSCaR assesses suspected cancer clusters or cancer hazards in local communities and supports efforts by community hospitals, health systems, and community-based cancer prevention programs by providing statistics on the distribution of cancer cases by type and treatment.
HThe majority of hospital cases and some pathology and treatment center cases, are submitted electronically using an internet-based, encrypted e-mail mechanism. Some cases are reported through a mail-in procedure whereby hospitals submit paper medical records and registry staff abstract the cases at the hospitals’ expense. The other method of reporting is on practitioner notification forms submitted by physician offices, ambulatory surgery centers and other freestanding treatment facilities which are received by FAX or mail and manually entered into the system.
New electronic data files are added to a facility-specific subsystem in RMCDS. Within the appropriate subsystem, an Oregon edit set is run against each file of newly received cases. The edit set uses CDC’s Genedits program to detect inconsistencies and errors. The edits are based on NAACCR metafiles and standard edit logic. The resulting error report is mailed to the submitting facility for review and correction. A copy of each error report is given to a data specialist who does a visual review process to compare the assigned codes with the text documentation to verify patient demographics, site/histology, grade, stage of disease, and treatment information to ensure the accuracy of coded data. A quality assurance feedback report is sent to the reporting facility listing data items that were corrected and any other issues identified during quality assurance review. After this review is complete, matching and case consolidation is done, merging the facility-specific subsystem into the main databases. Reports generated from RMCDS identify cases that are matches or possible matches. Death clearance is conducted annually. Death certificate data from the Oregon Center for Health Statistics is electronically linked with the registry database to update registry data and to identify cases that have not been reported to the registry. Data sharing agreements exist and cases are exchanged twice a year with 13 state registries including all adjoining states. Duplicate records reports are run every three months from RMCDS to identify and resolve duplicate cases. The process of geocoding identifies incorrect addresses. Linkage with death certificate files fill in missing social security numbers, correct misspelled names and verify date of birth. In addition facilities are randomly selected for case-finding and data quality audits.
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Before the release of any data, all research proposals requesting the use of confidential cancer registry data must be reviewed by Oregon Health Services for compliance with the following criteria: 1) The proposed research will be used to determine the sources of cancer among the residents of Oregon or to reduce the burden of cancer in Oregon; 2) the data requested are necessary for the efficient conduct of the study; 3) adequate protections are in place to provide secure conditions to use and store the data; 4) assurances are given that the data will only be used for the purposes of the study, and assurances that confidential data will be destroyed at the conclusion of the study; 5) the researcher has adequate resources to carry out the proposed research; 6) the proposal has been reviewed and approved by the Committee for the Protection of Human Subjects or is exempt from such review; 7) any additional safeguards needed to protect the data from inadvertent disclosure due to unique or special characteristics of the proposed research have been required of the researcher; and 8) the research methodology has been reviewed for scientific excellence by a nationally recognized peer group, or if such a review has not taken place, that an ad hoc peer review subcommittee of the OSCaR Advisory Committee containing appropriately qualified scientists has performed a peer review of the research. Additionally, all relevant contracts and/or fees have been paid prior to data release.
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In preparation of this data, every effort has been made to offer the most current, correct, complete and clearly expressed information possible. However, some errors in the data may exist. In particular, but without limitation, the Oregon Cancer Registry disclaims any liability for compilation and typographical errors and accuracy of the information that may be contained in the data. The Oregon Cancer Registry reserves the right to make changes to data within the registry at any time without notice.
This dataset requires prior approval by an IRB. Please access the application and guidelines at the following website: http://www.oregon.gov/DHS/ph/oscar/research.shtml
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