Central Cancer Registry Data Sources

Central cancer registry data sources are external data resources available to central cancer registries for the collection and verification of cancer-related information. The scope and content of the data to be collected from external data resources is defined in the standardized data dictionary maintained by the North American Association of Central Cancer Registries.

*Numbers rank the data sources on the quality of useful data available on a scale of 1 being the most useful and 10 being the least useful.

1. Hospitals

Healthcare facilities that provide inpatient and outpatient diagnostic, treatment, and palliative care services. They may serve a community or regional population or serve as a teaching and referral center. A hospital may seek approval for its cancer program from the American College of Surgeons Commission on Cancer, whose program standards require operation of a hospital cancer registry.

2. Freestanding Pathology Laboratories

Pathology laboratories that operate independently from other healthcare facilities, whose clients may include physician and clinic practices as well as hospitals. They examine organs, tissues, cells, and bodily fluids removed from patients for the investigation and diagnosis of disease, and conduct autopsies to study disease processes and to determine cause of death. Pathology reports include the type of material examined, body location from which the specimen was taken, gross and microscopic description and evaluation of tissues, components of bodily fluids, and diagnosis. Pathology laboratories may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to pathology records.

3. Cancer Treatment Facilities

Healthcare facilities established as separate entities from traditional hospitals, though they may be affiliated with hospitals. They offer a range of diagnostic and treatment services to cancer patients, such as radiation and chemotherapy treatments, including overall management of oncologic care. Cancer centers maintain patient medical records; they may provide cancer information to hospital registries for shared patients or establish their own registry databases for monitoring patient care and outcomes. They may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to their medical records.

3. Freestanding Healthcare Practitioners

Solo or group physician practices, usually focused on a specialty area of medical practice such as internal medicine, general surgery, or urology. Their medical records identify cancer patients and provide cancer-specific treatment data and patient follow-up information. Physician practices may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to their medical records.

4. Pharmacies

Pharmacies stock and release drugs for treatment as ordered by physicians, address complex clinical medication management issues, and provide information on available drugs, including generic and brand names, disease-specific prescriptions, and drugs administered to individual patients.

4. Health Insurance Plans

Medical practice managed by an insurance plan, in which subscribers generally receive primary care at clinics owned by the plan, with referral to outside specialists as needed. A plan maintains consolidated medical records for its patients who receive medical care from multiple facilities and may provide cancer information on shared patients to hospital registries or establish its own registry database for monitoring patient care and outcomes. A plan may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to its medical records.

5. Bureau of Vital Statistics

An agency within a state government that collects, maintains, and distributes information on births and deaths for state residents. It provides demographic and follow-up data for patients in the central registry database, including race, ethnicity, occupation, and date and cause of death.

5. Census Tract Database

A database maintained by the United States Census Bureau containing demographic and economic data by census tract, county, and state divisions. It provides information for generating a measure of socioeconomic status for cancer patients by address at diagnosis.

5. State Health Departments

State government agencies that promote the health of state residents. They usually apply for and manage federal grants to support federally mandated health-related programs such as the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). Central registries are required to link their data with the NBCCEDP database to identify missing cases and improve data quality in both databases.

6. IHS/Local Tribe Clinics

The Indian Health Service (IHS) provides comprehensive health services through IHS and tribally contracted hospitals, health centers, school health centers, and health stations. The health services provided include medical, dental, and environmental health programs. Central registries are required to link data with the IHS database to improve the identification and surveillance of American Indians and Alaska Natives diagnosed with cancer.

7. National Death Index

A central computerized index of death record information aggregated from state vital statistics offices, beginning with 1979 deaths. Established as a resource to aid epidemiologists and other health and medical investigators with mortality ascertainment activities, the index provides information on the date, location, and cause of death.

8. Nursing Homes/Hospices

Long-term care and end-of-life care facilities. Cancer patients may be diagnosed while residing permanently or temporarily in nursing homes. Patients with terminal disease may receive hospice care at home or in a specialty hospital unit, nursing facility, or designated hospice facility. Nursing homes and hospices may be required to respond to inquiries from the central registry, or to allow central registry access to their medical records, particularly for case ascertainment on patients who have died with a cancer diagnosis identified only through death certification information.

8. Freestanding Diagnostic Imaging Centers

Independent healthcare facilities whose clients may include physician and clinic practices as well as hospitals. They create images of body organs and structures for the purposes of diagnosing disease, evaluating disease progression, and monitoring the effects of treatment. Imaging information generally is provided to central cancer registries through reporting procedures established with physician offices and treatment facilities.

8. State Cancer Registries

Population-based registries that identify cancer cases not reported by outside entities, abstract missing cancer information, and consolidate cancer information from multiple sources into a single record. Registry staff monitor the completeness of reporting, maintain relationships with reporting entities, know coding systems and rules, and help reporting entities refine casefinding and abstracting practices.

9. Voter Registration

Rolls of registered voters within a state, maintained by local jurisdictions, containing the voter's name, date of registration, and address at registration. Voter registration provides information for determination and confirmation of address at diagnosis.

9. Department of Motor Vehicles

A state agency that issues driver licenses and maintains traffic offense data. It provides information for the determination or confirmation of date of birth and address at diagnosis.

10. Prisons

Incarcerated patients' medical records may document routine care delivered to a prison population or individual care received at a prison medical center. Cancer diagnostic and treatment information for prisoners generally is available through the hospital that provides non-routine medical services to the prison. Follow-up information may be obtained from the healthcare provider.