The Oregon State Cancer Registry (OSCaR)

Frequently-asked questions:


What does this data set describe?

Title:
The Oregon State Cancer Registry (OSCaR)

Abstract:
This data system contains individual tumor level cases of cancers among all Oregon residents starting in 1996 to the present.

Supplemental information:
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.

  1. How should this data set be cited?

    Oregon Department of Human Services, Oregon State Cancer Registry (OSCaR), Unknown, The Oregon State Cancer Registry (OSCaR).

    Online links:
  2. What geographic area does the data set cover?

    Bounding coordinates:
    West: -124.97
    East: -116.41
    North: 46.35
    South: 41.91

  3. What does it look like?

  4. Does the data set describe conditions during a particular time period?

    Beginning date: 01011996
    Ending date: Current
    Currentness reference:
    As of time period end date

  5. What is the general form of this data set?

  6. How does the data set represent geographic features?

    1. How are geographic features stored in the data set?

    2. What coordinate system is used to represent geographic features?

  7. How does the data set describe geographic features?

    Entity and attribute overview:
    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

    Entity and attribute detail citation:
    http://www.naaccr.org/index.asp?Col_SectionKey=7&Col_ContentID=133
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Who produced the data set?

  1. Who are the originators of the data set? (may include formal authors, digital compilers, and editors)


  2. Who also contributed to the data set?

  3. To whom should users address questions about the data?

    Oregon State Cancer Registry, Public Health Division, Oregon Department of Human Services
    800 NE Oregon Street, Suite 730
    Portland, Oregon 97232
    USA

    971-673-0986 (voice)
    971-673-0996 (FAX)
    oscar.ohd@state.or.us
    Hours of Service: 8:00 am - 5:00 pm Monday through Friday
    Contact Instructions:
    Call or email
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Why was the data set created?

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.

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How was the data set created?

  1. Where did the data come from?

  2. What changes have been made?

    Date: Unknown (change 1 of 1)
    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.

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How reliable are the data; what problems remain in the data set?

  1. How well have the observations been checked?

  2. How accurate are the geographic locations?

  3. How accurate are the heights or depths?

  4. Where are the gaps in the data? What is missing?

    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.

  5. How consistent are the relationships among the observations, including topology?

    None

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How can someone get a copy of the data set?

Are there legal restrictions on access or use of the data?

Access constraints: Confidential information is protected by federal and state laws. Information collected by OSCaR is secure from public disclosure and cannot be subpoenaed by a court of law. However, the data without personal identifiers is available to researchers to assist them in cancer research. Access restrictions include legal prerequisites for using the data set after access is granted (these include any access constraints applied to assure the protection of privacy or intellectual property, and any special restrictions or limitations on obtaining the data set.) Access to this data requires formal IRB approval.
Use constraints:
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.

Distributor 1 of 1

  1. Who distributes the data set?

    Oregon State Cancer Registry, Public Health Division, Oregon Department of Human Services
    800 NE Oregon Street, Suite 730
    Portland, Oregon 97232
    USA

    971-673-0986 (voice)
    971-673-0996 (FAX)
    oscar.ohd@state.or.us
    Hours of Service: 8:00 am - 5:00 pm Monday through Friday
    Contact Instructions:
    Call or email

  2. What's the catalog number I need to order this data set?

    Database (The Rocky Mountain Cancer Data System (RMCDS))

  3. What legal disclaimers am I supposed to read?

    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.

  4. How can I download or order the data?

  5. Is there some other way to get the data?

    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

  6. What hardware or software do I need in order to use the data set?

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Who wrote the metadata?

Dates:
Last modified: 20080826

Metadata author:
Environmental Public Health Tracking, Public Health Division, Oregon Department of Human Services,
800 NE Oregon Street, Suite 640
Portland, Oregon 97232
USA

971-673-0977 (voice)
971-673-0979 (FAX)
epht.ohd@state.or.us
Hours of Service: 8:00 am - 5:00 pm Monday through Friday
Contact Instructions:
Email or call.

Metadata standard:
FGDC Content Standards for Digital Geospatial Metadata (EPHT Metadata Profile Version 1.2)

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