A national framework for cancer surveillance in the United States

Phyllis A. Wingo1 , Holly L. Howe2, Michael J. Thun3, Rachel Ballard-Barbash4, Elizabeth Ward3, Martin L. Brown4, JoAnne Sylvester5, Gilbert H. Friedell6, Linda Alley1, Julia H. Rowland4 and Brenda K. Edwards4

(1) Centers for Disease Control and Prevention, 4770 Buford Highway, Atlanta, GA, 30341
(2) North American Association of Central Cancer Registries, Springfield, IL
(3) American Cancer Society, Atlanta, GA
(4) National Cancer Institute, Bethesda, MD
(5) American College of Surgeons, Chicago, IL
(6) Markey Cancer Center, University of Kentucky, Lexington, KY

Received: 08 July 2004 Accepted: 20 September 2004

Abstract Enhancements to cancer surveillance systems are needed for meeting increased demands for data and for developing effective program planning, evaluation, and research on cancer prevention and control. Representatives from the American Cancer Society, Centers for Disease Control and Prevention, National Cancer Institute, National Cancer Registrars Association, and North American Association of Central Cancer Registries have worked together on the National Coordinating Council for Cancer Surveillance to develop a national framework for cancer surveillance in the United States. The framework addresses a continuum of disease progression from a healthy state to the end of life and includes primary prevention (factors that increase or decrease cancer occurrence in healthy populations), secondary prevention (screening and diagnosis), and tertiary prevention (factors that affect treatment, survival, quality of life, and palliative care). The framework also addresses cross-cutting information needs, including better data to monitor disparities by measures of socioeconomic status, to assess economic costs and benefits of specific interventions for individuals and for society, and to study the relationship between disease and individual biologic factors, social policies, and the environment. Implementation of the framework will require long-term, extensive coordination and cooperation among these major cancer surveillance organizations.
Keywords cancer surveillance - surveillance - incidence - mortality - survival - cancer control - survivorship - quality of care - quality of life

We acknowledge the contributions of Ronda Starr, who assisted in the preparation of the tables, the web addresses for the data sources, and the references.