Reflections of Change

1. Reflections of Change by Ryan Intlekofer, RN, CTR Division of Cancer Prevention and Control National Center for Chronic Disease Prevention and Health Promotion Centers for Disease Control and Prevention (CDC) department of health and human resources

3. The Journey • Where we started • Where we are • Where are we going ?

4. Beginning History of Cancer Registration Europe Cancer was first documented as a cause of death in 1629 in the “Bills of Mortality” published annually in England. The first known systematic collection of information on cancer was the general census of cancer in London – 1728

5. History of Cancer Registration in the U.S. • 1913 – North American Surgeons • 1930 – Hospital Based Registries • 1932 – ACoS Published First Standards • 1933 – 140 Cancer Clinics were approved by the ACoS • 1941 – Connecticut Cancer Registry

7. Inventions • 1938 – ball point pen

8. Setting Standards • 1956 – CoC approval standards were revised and cancer registries were designated as mandatory components of Commission approved cancer programs. • 1950’s – Also marked the beginning of the End Results Program. Continuous collation of cancer registry data was begun.

10. Continued Expansion • 1973 – SEER program • 1974 – NCRA • 1983 – CTR credentialing • 1989 – National Cancer Data Base • 1990 – NAACCR • 1992 – NPCR

11. SEER • Established in 1973 • Case ascertainment began in the states of Connecticut, Iowa, New Mexico, Utah, and Hawaii, and the metropolitan areas of Detroit and San Francisco-Oakland. 14% population coverage • SEER Expansion – Current 26% population coverage

12. NCRA – CTR • Established in 1974 • 2004 – 4,000 members • Education Foundation established • CTR • Paper to Web-based exam

13. NCDB • Established in 1989 to serve as a comprehensive clinical surveillance resource about cancer care in the US. • First used to track and compare treatment of most types of cancer. • Data Cycle

14. North American Association of Central Cancer Registries (NAACCR) • Uniform data standards • Education and training • Certification • Data aggregation and publication • Promotion of cancer surveillance data use

15. National Program of Cancer Registries (NPCR) • 1995+ • 45 States, 3 territories, District of Columbia • 96% population coverage SEER NPCR NPCR/SEER

17. Additional Tools • SEER Self Instructional Manuals • ICD-0 • SEER Program Code Manual • SEER Extent of Disease Manual • SEER Summary Staging Manual • AJCC Cancer Staging Manual • CoC DAM, ROADS and FORDS

18. Cancer Data Collection • What changes have been made in cancer data collection? • Fountain pen to ballpoint pen • Card files to computer generated suspense lists • Paper abstracts to computer database files • Manually counting numbers of cases to computer generated totals

19. Computerization • Personal computers • Cancer Registry Software • DOS to Windows • Networks • Linkages

20. Where are we now • 2001 – ICD-O 3 Implemented new case reportability standards for the hematopoietic diseases • 2004 – Benign Brain Reporting • 2004 – Collaborative Stage Reporting

21. Data Submission Hospital Cancer Registry State Cancer Registry SEER NAACCR NPCR

23. Where are we going?

25. Contact Information rbi1@cdc.gov 770-488-1075