Surveillance, Epidemiology, and End Results Program

Surveillance, Epidemiology, and End Results Program
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Name	Surveillance, Epidemiology, and End Results Program
Formation	1973
Parent organization	National Cancer Institute

Surveillance, Epidemiology, and End Results Program is a long-running cancer registry initiative established to collect incidence, survival, and prevalence data for malignant and select benign neoplasms across defined U.S. populations. It supports population-based cancer statistics, informs public health policy, and underpins epidemiologic and clinical research through standardized case reporting and longitudinal follow-up. The program interacts with multiple federal and state agencies, academic centers, and international organizations to ensure data quality and comparability.

History

The program was founded amid health policy changes in the early 1970s alongside initiatives such as the National Cancer Act of 1971, the expansion of the National Institutes of Health, and growing interest from institutions including Johns Hopkins University, Harvard University, and Mayo Clinic. Early collaborations involved state health departments like the New York State Department of Health, the California Department of Public Health, and the Texas Department of State Health Services, and academic partners including University of California, San Francisco, University of Michigan, and Columbia University. Over subsequent decades it adapted to technological shifts exemplified by adoption of standards from the World Health Organization, partnerships with Centers for Disease Control and Prevention, and methodological advances influenced by work at Fred Hutchinson Cancer Research Center and Memorial Sloan Kettering Cancer Center. Major milestones track integration of new classification systems such as the International Classification of Diseases for Oncology and expansions of participating registries in states like Florida, Georgia, and Washington.

Organization and Governance

Governance involves the National Cancer Institute with advisory input from stakeholders including the American Cancer Society, the American Society of Clinical Oncology, and the Association of American Cancer Institutes. Operational oversight aligns with federal statutes that guide collaborations between entities such as the Department of Health and Human Services, state cancer registries, and academic research centers like University of California, Los Angeles and Yale University. Technical standards and policy decisions have been influenced by expert groups from International Agency for Research on Cancer, the Commission on Cancer, and panels convened at institutions such as Dana-Farber Cancer Institute and Johns Hopkins Bloomberg School of Public Health.

Data Collection and Coverage

Data are collected from hospitals, pathology laboratories, outpatient facilities, and cancer treatment centers including MD Anderson Cancer Center, Cleveland Clinic, and Stanford Health Care, with supplemental information from state vital records offices like the California Department of Public Health and federal sources such as the Social Security Administration. Coverage expanded over time to include metropolitan areas and states, capturing diverse populations from regions including Los Angeles County, Cook County, Maricopa County, King County, and Harris County. Case ascertainment follows reporting from institutions such as Brigham and Women's Hospital, Mount Sinai Hospital, and Rush University Medical Center, ensuring representation across urban and rural areas exemplified by registries in Alaska, New Mexico, and Louisiana.

Data Content and Coding Standards

The dataset encompasses variables on site, histology, stage, first course of treatment, follow-up, and survival using coding schemes derived from the International Classification of Diseases for Oncology, the AJCC Cancer Staging Manual, and matrixes informed by the World Health Organization. Tumor coding, behavior, and laterality adhere to conventions used by registries at Memorial Sloan Kettering Cancer Center and classifications shaped by input from experts at Johns Hopkins Hospital and Mayo Clinic. Data processing pipelines incorporate standards coordinated with organizations like the Centers for Medicare & Medicaid Services and validation procedures developed in collaboration with research groups at University of Florida and Duke University.

Research Uses and Impact

The program has supported epidemiologic analyses informing risk-factor studies that cite work from investigators at Harvard School of Public Health, Columbia University Mailman School of Public Health, and Brown University, clinical outcome research used by centers such as Dana-Farber Cancer Institute, and population health evaluations influencing policy at the Centers for Disease Control and Prevention and Agency for Healthcare Research and Quality. It underpins survival trend reports cited by the American Cancer Society, comparative effectiveness research involving Johns Hopkins University School of Medicine, and international comparisons leveraging data from the International Agency for Research on Cancer. Outputs have contributed to guidelines promulgated by the National Comprehensive Cancer Network and informed research published by investigators at Fred Hutchinson Cancer Research Center and Albert Einstein College of Medicine.

Accessibility and Data Access Policies

Access to de-identified aggregated statistics is public and accessed by researchers, clinicians, and organizations including National Institutes of Health investigators, analysts at RAND Corporation, and staff at Kaiser Permanente. Restricted-use datasets require formal applications and data use agreements with institutional review by entities such as institutional review boards at Yale School of Medicine or University of Pennsylvania. Linkage projects with administrative databases such as the Medicare claims program or social datasets have governance parallels with policies at the Social Security Administration and collaborations with academic partners like University of Minnesota and University of Southern California.

Limitations and Criticisms

Critiques have addressed gaps in data granularity and timeliness noted by investigators at Columbia University, potential under-ascertainment in rural areas represented by registries in Wyoming or Montana, and variation in completeness across registries observed in analyses from University of North Carolina at Chapel Hill and Emory University. Concerns about coding changes over time implicate comparisons across periods influenced by revisions from the AJCC Cancer Staging Manual and the International Classification of Diseases for Oncology, while privacy constraints and data access procedures have been debated among scholars at Harvard Medical School, Stanford University School of Medicine, and policy analysts at Brookings Institution.

Category:Cancer registries