Population-Based Registries

Population-based registries record all new cases in a defined population (most frequently a geographical area such as a state) with an emphasis on epidemiology and public health.

Data from population-based registries can be used for monitoring the distribution of late-diagnosed cases of cancer of the types for which early diagnosis is the strategy for control, especially in certain communities, ethnicities, age and other demographic groups.

For example, Cancer surveillance programs such as SEER (Surveillance, Epidemiology, and End Results) use cancer statistics collected by population-based registries to monitor the distribution of cases of cancer among certain communities, ethnicities, ages, and other demographic groups.

The population-based registry plays an important role in improving patient care programs.

Linkage services from this type of cancer registry for care providers provide a cost-effective source of data necessary for clinical programs, such as stage at diagnosis data to managed care organizations, treatment selection data for groups monitoring clinical treatment guideline utilization, follow-up results of a mammography program. Registry data guides specific targeting of populations for such programs as the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) which allows those in the program who are diagnosed with cancer to receive treatment through Medicaid, thus helping those who are underinsured or uninsured receive quality cancer treatment.

The central cancer registry may also provide services to hospital cancer programs such as shared follow-up, death clearance, and pooled data on treatment, stage, or survival.

Many cancer agencies and organizations rely on data collected by population-based registries.

Based on accurate and timely cancer statistics, healthcare planners make decisions on resource allocation, such as the placement of radiotherapy facilities, proper staffing of cancer control programs, and "market share" reports for existing facilities. Cancer statistics provided by population-based cancer registries make it possible for public health administrators to evaluate suspected clusters of cancer within communities or population groups.

Cancer research programs benefit greatly from the cancer data collected by population-based cancer registries: an unbiased group of cases can be selected for cancer studies; studies of association of cancer and other diseases, environments, occupations, or other sources of exposures can be conducted.

SEER has a Medicare-linked database which is a good source for detailed information as it relates to the elder Medicare population. There is a magnitude of information that can be captured by this linkage including the ability to estimate chemotherapy use among patients with a prior cancer diagnosis, cost attributable to colorectal cancer by phases of care, assessment of instances of bladder cancer and chronic myeloid leukemia cases missed by cancer registries and use of the Medications Enquiry Database National Drug Codes to assess patterns of systemic breast cancer treatment.

Oncotype variables are captured via a linkage of all invasive breast cancers diagnosed in SEER registries to oncotype test results and orders provided by the Genomic Health Clinical Laboratory.

Population-based central registries are able to use systems like eMaRC Plus to receive and process reports from physicians’ offices in HL7 CDA format and HL7 files from pathology laboratories which facilitates early notification to central registries of cancer cases and promotes accurately capturing all reportable cancer cases.

Advantages of a population-based cancer registry include cancer control programs, patient care programs, administrative programs, and cancer research programs.

In contrast to hospital-based registries, population-based registries are designed to determine cancer patterns among various populations or sub-populations, to monitor cancer trends over time, to guide planning and evaluation of cancer control efforts, to help prioritize health resource allocations, and to advance clinical, epidemiological, and health services research.

Updated: December 11, 2023