Cancer Causes & Control

, Volume 14, Issue 7, pp 663–672

A vision for cancer incidence surveillance in the United States

  • Holly L. Howe
  • Brenda K. Edwards
  • John L. Young
  • Tiefu Shen
  • Dee W. West
  • Mary Hutton
  • Catherine N. Correa


A comprehensive framework for cancer surveillance should span the entire lifespan and be capable of providing information on risk, burden, disparity, cost, cancer care, survival, and death. Cancer incidence, the point in the continuum when an individual is diagnosed with cancer, has a strong, well-developed system to produce information about newly diagnosed cancer cases. However, in the future, this system must be enhanced and integrated with other cancer surveillance networks and other systems to provide timely information on the burden of newly diagnosed patients with respect to various cross-cutting population characteristics (e.g., social, economic, race/ethnic, urbanicity, or access to care) to define, monitor, and reduce incidence and various disparities noted among population groups. Collaboration in data collection, standard setting, surveillance activities, research, education and training, data use, and advocacy among all registries and national programs will be important to the continued success of the cancer incidence surveillance system. The cancer registry is an integral part of the infrastructure to reduce the burden of cancer, including the numbers of newly diagnosed cases.

cancer surveillance epidemiology neoplasms public health surveillance 


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  1. 1.
    Centers for Disease Control and Prevention(1994) State cancer registries: status of authorizing legislation and enabling regulations-United States, October 1993. MMWR 43: 71-75.Google Scholar
  2. 2.
    Hutton MD, Simpson LD, Miller DS, Weir HK, McDavid K, Hall HI (2001) Progress toward nationwide cancer surveillance: an evaluation of the National Program of Cancer Registries, 1994-1999. J Registry Manage 28(3): 113-120.Google Scholar
  3. 3.
    Swan J, Wingo PA, Clive R, et al. (1998) Cancer surveillance in the US: can we have a national system? Cancer 83: 1282-1291.Google Scholar
  4. 4.
    Hulstrom D, ed. (2001) Standards for Cancer Registries, Vol. II: Data Dictionary and Definitions, 6th edn. Version 9.1. Springfield, IL: North American Association of Central Cancer Registries.Google Scholar
  5. 5.
    Stroup NE, Zack MM, Wharton M (1994) Sources of routinely collected data for surveillance. In: Teutsch SM, Churchill RE, eds. Principles and Practice of Public Health Surveillance, New York, NY: Oxford University Press, pp. 31-85.Google Scholar
  6. 6.
    Hankey BF, Ries LAG, Edwards BK (1999) The Surveillance, Epidemiology, and End Results Program: A National Resource. Cancer Epidemiol Biomarkers Prev 8: 1117-1121.Google Scholar
  7. 7.
    Kim H.-J, Fay MP, Feuer EJ, Midthune DN (2000) Permutation tests for joinpoint regression with applications to cancer rates. Stat Med 19: 335-351.Google Scholar
  8. 8.
    Ries LAG, Wingo PA, Miller DS, et al. (2000) The annual report to the nation on the status of cancer, 1973-1997, with a special section on colorectal cancer. Cancer 88: 2398-2424.Google Scholar
  9. 9.
    Howe HL, Wingo PA, Thun MJ, et al. (2001) Annual report to the Nation on the status of cancer, 1973-1998, featuring cancers with increasing trends. J Natl Cancer Inst 93: 824-842.Google Scholar
  10. 10.
    Edwards BK, Howe HL, Ries LAG, et al. (2002) Annual report to the nation on the status of cancer, 1973-1999, featuring implications of age and aging on the US cancer burden. Cancer 94(10): 2766-2792.Google Scholar
  11. 11.
    Holford TR (1991) Understanding the effects of age, period and cohort on incidence and mortality rates. Annu Rev Public Health 12: 425-457.Google Scholar
  12. 12.
    Holford TR (1983) The estimation of age, period and cohort effects for vital rates. Biometrics 39: 311-324.Google Scholar
  13. 13.
    Hankey BF, Ries LA, Kosary CL, et al. (2000) Partitioning linear trends in age-adjusted rates. Cancer Causes Control 11(1): 31-35.Google Scholar
  14. 14.
    Hulstrom D, Gershman ST, Havener L, eds. (2003) NAACCR Standards Implementation Guidelines. Springfield (IL): North American Association of Central Cancer Registries.Google Scholar
  15. 15.
    Cooper GS, Yuan Z, Stange KC, Dennis LK, Amini SB, Rimm AA (2000) Agreement of Medicare claims and tumor registry data for assessment of cancer-related treatment. Med Care 38: 411-421.Google Scholar
  16. 16.
    Klabunde CN, Potosky AL, Harlan LC, Kramer BS (1998) Trends and black/white differences in treatment for nonmetastatic prostate cancer. Med Care 36: 1337-1348.Google Scholar
  17. 17.
    Wingo PA, Luke E, O'Brien K, et al. (2001) Population-based patterns of care studies: collaboration among state cancer registries, The American College of Surgeons, and The American Cancer Society. J Registry Manage 28: 5-17.Google Scholar
  18. 18.
    Ayanian JZ, Kohler BA, Abe T, Epstein AM (1993) The relation between health insurance coverage and clinical outcomes among women with breast cancer. N Engl J Med 329: 326-331.Google Scholar
  19. 19.
    Brooks JM, Chrischilles E, Scott S, Ritho J, Chen-Hardee S (2000) Information gained from linking SEER cancer registry data to state-level hospital discharge abstracts. Med Care 38: 1131-1140.Google Scholar
  20. 20.
    Pickle LW, Munjiole M, Jones GK, White AA (1999) Exploring spatial patterns of mortality: the new atlas of United States mortality. Stat Med 18: 3211-3220.Google Scholar
  21. 21.
    Mariotto A, Capocaccia R, Verdecchia A, et al. (2002) Projecting SEER cancer survival rates to the U.S.: an ecological regression approach. Cancer Causes Control 13(2): 101-111.Google Scholar
  22. 22.
    Wiggins L, ed. (2002) Using geographic information systems technology in the collection. Analyses and Presentation of Cancer Registry Data: A Handbook of Basic Practices, Springfield (IL): North American Association of Central Cancer Registries.Google Scholar
  23. 23.
    Krieger N, Chen JT, Waterman PD, Soobader MJ, Subramanian SV, Carson R (2002) Geocoding and monitoring of US socioeconomic inequalities in mortality and cancer incidence: does the choice of area-based measure and geographic level matter?: the Public Health Disparities Geocoding Project. Am J Epidemiol 156(5): 471-482.Google Scholar
  24. 24.
    Kaufman JS, Kaufman S (2001) Assessment of structured socioeconomic effects on health. Epidemiology 12: 157-167.Google Scholar
  25. 25.
    Mandelblatt JS, Ganz PA, Kahn KL (1999) Proposed agenda for the measurement of quality-of-care outcomes in oncology practice. J Clin Oncol 17: 2614-2622.Google Scholar
  26. 26.
    Potosky AL, Harlan LC, Standford JL, et al. (1999) Prostate cancer practice patterns and quality of life: the Prostate Cancer Outcomes Study. J Natl Cancer Inst 91: 1719-1724.Google Scholar
  27. 27.
    Klabunde CN, Warren JL, Legler JM (2002) Assessing comorbidity using claims data. An overview. Med Care 40(Suppl): IV-26-IV-35.Google Scholar
  28. 28.
    Tucker TC, Howe HL (2001) Measuring the quality of central cancer registries: the NAACCR perspective. J Registry Manage 28: 41-44.Google Scholar
  29. 29.
    Fritz A (2001) The SEER program's commitment to data quality. J Registry Manage 28(1): 35-40.Google Scholar
  30. 30.
    Hewitt M, Simone J, eds. (2002) Enhancing Data Systems to Improve the Quality of Cancer Care. Washington D.C: National Academy Press.Google Scholar
  31. 31.
    West DW (2000) Building a fully developed research program. Presented at the E-Toolkit Workshop. Seattle, WA.Google Scholar
  32. 32.
    Tucker TC (2000) Building the research capacity of your registry. Presented at the NAACCR E-Toolkit Workshop, Seattle. WA.Google Scholar
  33. 33.
    Kohler BA (2000) Building research capacity for central registries in state health departments. Presented at the NAACCR E-Toolkit Workshop, Seattle, WA.Google Scholar
  34. 34.
    Surveillance Implementation Group(1999) Cancer surveillance research implementation plan. Rockville, MD: National Cancer Institute, pp. 4-8.Google Scholar
  35. 35.
    North American Association of Central Cancer Registries(2003) Cancer Surveillance Institute I: Principles and Public Health Applications. Training course, San Jose, CA.Google Scholar
  36. 36.
    The SEER Program Code Manual, 3rd Edn. (1998) Bethesda (MD): National Cancer Institute.Google Scholar
  37. 37.
    Travis LB, Curtis RE, Glimelius B, et al. (1993) Second cancers among long-term survivors of non-Hodgkin's lymphoma. J Natl Cancer Inst 85: 1932-1937.Google Scholar
  38. 38.
    Howe HL, ed. (2003) A Review of the definition for multiple primary cancers in the United States. Workshop Proceedings from December 4-6, 2002 in Princeton, New Jersey, Springfield (IL): North American Association of Central Cancer Registries.Google Scholar
  39. 39.
    McLaughlin C (2002) Confidentiality protection in publicly released central cancer registry data. J Registry Manage 29(3): 84-88.Google Scholar
  40. 40.
    National Cancer Institute(2001) Confidentiality, data security, and cancer research: report of a workshop, Bethesda, MD, December 1-2, 1999. Available at: announcements/confintro.html. Accessed April 10.Google Scholar
  41. 41.
    Deapen D, Chen VW, Gershman S, Croucher T, Standford J, Lerchen M (1999) Data Use and Confidentiality Task Force Report. Sacramento, CA: North American Association of Central Cancer Registries.Google Scholar
  42. 42.
    North American Association of Central Cancer Registries(2002) NAACCR Workshop Report: Data Security and Confidentiality. Springfield (IL): North American Association of Central Cancer Registries.Google Scholar
  43. 43.
    Nobles M (2000) History counts: a comparative analysis of racial/ color categorization in US and Brazilian Censuses. Am J Public Health 90: 1738-1745.Google Scholar
  44. 44.
    Wallman KK, Evinger S, Schechter S (2000) Measuring our nation's diversity: developing a common language for data on race/ethnicity. Am J Public Health 90: 1704-1708.Google Scholar
  45. 45.
    URL (2003) Accessed on March 20.Google Scholar
  46. 46.
    North American Association of Central Cancer Registries (2002) CINA+ Online. Accessed on October 18.Google Scholar
  47. 47.
    URL (2003) Accessed on March 20.Google Scholar
  48. 48.
    Rakowski W, Clark MA, Ehrich B (1999) Smoking and cancer screening for women ages 42-75: associations in the 1990-1994 National Health Interview Surveys. Prev Med 29(6 Pt 1): 487-495.Google Scholar
  49. 49.
    Centers for Disease Control and Prevention(1998) Behavioral Risk Factor Surveillance System User's Guide. Atlanta, GA: US Department of Health and Human Services, Centers for Disease Control and Prevention. (Available at brfss/usersguide.htm).Google Scholar
  50. 50.
    Pickle LW, Feuer EJ, Edwards BK (2000) Prediction of incident cancer cases in non-SEER counties. Presented at the annual meeting of the North American Association of Central Cancer Registries, New Orleans, LA, April 19.Google Scholar
  51. 51.
    Ries LAG, Eisner MP, Kosary CL, eds. et al. (2002) SEER Cancer Statistics Review, 1973-1999, Bethesda, MD: National Cancer Institute, 1973-1999.Google Scholar

Copyright information

© Kluwer Academic Publishers 2003

Authors and Affiliations

  • Holly L. Howe
    • 1
  • Brenda K. Edwards
    • 2
  • John L. Young
    • 3
  • Tiefu Shen
    • 4
  • Dee W. West
    • 5
  • Mary Hutton
    • 6
  • Catherine N. Correa
    • 7
  1. 1.NAACCR. IncSpringfieldUSA
  2. 2.National Cancer InstituteBethesdaUSA
  3. 3.Emory UniversityAtlantaUSA
  4. 4.Illinois Department of Public HealthSpringfieldUSA
  5. 5.Northern California Cancer CenterUnion CityUSA
  6. 6.Centers for Disease Control and PreventionAtlantaUSA
  7. 7.Louisiana Tumor RegistryNew OrleansUSA

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