National Program of Cancer Registries

National Program of Cancer Registries
Name	National Program of Cancer Registries
Formation	1992
Type	Program
Parent organization	Centers for Disease Control and Prevention
Headquarters	Atlanta, Georgia

National Program of Cancer Registries is a United States federal initiative administered by the Centers for Disease Control and Prevention to collect, analyze, and disseminate data on cancer incidence and trends. Established following amendments to the Public Health Service Act and in response to national policy directives, the program supports state and territorial cancer registries to inform clinical practice, public policy, and epidemiologic research. It operates in coordination with other national efforts, contributing to surveillance used by agencies, academic centers, and advocacy organizations.

History and Development

The program was created after legislative action including the Cancer Registries Amendment Act of 1992 and subsequent appropriations influenced by findings from commissions such as the Institute of Medicine and reports by the National Cancer Institute. Early implementation involved collaboration with organizations like the American Cancer Society, the North American Association of Central Cancer Registries, and state health departments including the California Department of Public Health and the New York State Department of Health. Milestones include integration with the Surveillance, Epidemiology, and End Results Program and alignment with international efforts exemplified by the International Agency for Research on Cancer. Policy shifts under administrations such as the Clinton administration and the Bush administration affected funding and scope, while scientific advances at institutions like Johns Hopkins University and Harvard School of Public Health influenced methods.

Program Structure and Governance

Administration is led by divisions within the Centers for Disease Control and Prevention and governed through cooperative agreements with entities such as state health departments (for example, the Texas Department of State Health Services and the Florida Department of Health), territorial registries (including Puerto Rico Department of Health), and tribal organizations. Oversight involves advisory groups with representatives from the National Institutes of Health, the Department of Health and Human Services, and professional bodies such as the American College of Surgeons and the Association of State and Territorial Health Officials. Governance arrangements reference statutory frameworks including provisions of the Public Health Service Act and align with guidelines promulgated by standards organizations like the Centers for Medicare & Medicaid Services and the Office of Management and Budget for federal data programs.

Data Collection and Management

Data collection relies on reporting from hospitals, laboratories, and providers including entities such as Mayo Clinic, Massachusetts General Hospital, and regional pathology labs, coordinated by state registries like the Michigan Cancer Surveillance Program. Case ascertainment and abstraction use standardized case report forms and classification systems such as the International Classification of Diseases for Oncology and staging systems promoted by the American Joint Committee on Cancer. Data flow integrates electronic sources including cancer-related records from health information exchanges used by institutions like Kaiser Permanente and clinical trial information from the National Cancer Institute. Management processes employ software and standards developed in partnership with organizations such as the North American Association of Central Cancer Registries and technical vendors used by academic centers such as Stanford University School of Medicine.

Research, Surveillance, and Public Health Impact

Program data underpin epidemiologic investigations at universities including University of California, San Francisco, Columbia University, and University of Washington, and inform policy analyses by agencies like the Agency for Healthcare Research and Quality. Surveillance outputs contribute to cancer control plans at the state level (for example, California Cancer Registry initiatives) and to national reports prepared by the National Cancer Institute and the Centers for Disease Control and Prevention. Findings influence clinical guidelines developed by organizations such as the American Society of Clinical Oncology and public health interventions coordinated with entities like the Susan G. Komen Foundation and American Association for Cancer Research. Longitudinal data support research on risk factors studied by investigators at institutions like Yale School of Medicine and University of North Carolina at Chapel Hill.

Funding and Partnerships

Funding is provided through congressional appropriations administered by the Centers for Disease Control and Prevention and distributed via cooperative agreements to states, territories, and tribal registries, with matching and supplemental support from foundations such as the Robert Wood Johnson Foundation and partnerships with professional organizations like the American Cancer Society. Collaborative research grants often involve the National Institutes of Health and interagency projects with the Department of Veterans Affairs and the Indian Health Service. Technical and training partnerships engage academic centers including Emory University and University of Michigan and nonprofit partners such as the Susan G. Komen Foundation and the Leukemia & Lymphoma Society.

Privacy, Quality Assurance, and Standards

Privacy protections align with federal statutes and regulations including the Health Insurance Portability and Accountability Act of 1996 and policies of the Department of Health and Human Services while balancing public health reporting needs under the Public Health Service Act. Quality assurance processes use audits, reabstraction studies, and certification protocols developed with the North American Association of Central Cancer Registries and the Commission on Cancer, and employ standards for data exchange promoted by the Office of the National Coordinator for Health Information Technology. External evaluations and methodological research conducted with partners such as RAND Corporation and the National Academies of Sciences, Engineering, and Medicine inform continuous improvement in data quality and confidentiality safeguards.

Category:Cancer surveillance