NPCR Education & Training Series

1. NPCR Education & Training Series Data Collection Standards in Cancer Surveillance by Ryan Intlekofer, RN, CTR

2. Presentation Outline • The Standard Setters • History of cancer registration and the development of data collection standards • Data collection of uniform data elements in uniform format • The process required to change a data element or format • Maintaining the data sets

3. The Standard Setters • The American College of Surgeons (ACoS), Commission on Cancer (CoC) • The American Joint Committee on Cancer (AJCC) • The National Institute of Health (NIH), Surveillance Epidemiology and End Results (SEER) Program • The Centers for Disease Control and Prevention (CDC), National Program of Cancer Registries (NPCR)

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

6. 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

7. SEER • Established in 1973 • Case ascertainment began in five states and two metropolitan areas providing 14% population coverage. • SEER Expansion – at the present time provides 26% population coverage. • SEER requires its constituent central registries to adhere to SEER’s data standards.

8. Data Publication and Use • SEER data are accessed directly and indirectly in printed and electronic formats • Used by researchers, clinicians and public health planners • By the end of 1999 the national SEER database contained information on over three million cases diagnosed since 1973

9. The National Cancer Data Base(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

10. Formation of the National Program of Cancer Registries • No nationwide, population-based cancer surveillance in the U.S. • Approximately 40 states had a central registry • Data items/records not standardized • In most states, no data available for planning/evaluation of cancer control activities

11. Cancer Registries Amendment Act (PL 102-515) • Passed by Congress October 24, 1992 • Authorized establishment of National Program of Cancer Registries (NPCR) • Set requirements for funded central registries

12. PL 102-515 authorized CDC to: • Work with states to develop model legs & regs • Set national standards for completeness, timeliness, and quality • Provide training on Central Registry operations • Standardize a minimum set of data items • Provide funds to states and territories to enhance or plan and implement registries

13. NPCR Funded Registries • State\territory wide, population-based registry • Statewide legislation/regulations • Compliance with standards • Completeness • Timeliness • Quality • Uniform data elements, uniform format • Statewide annual report

14. National Program of Cancer Registries (NPCR) • 1995+ • 45 states, 3 territories, Dist. Of Columbia • 96% population coverage SEER NPCR NPCR/SEER AK HI

15. Data Collection • 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

16. Rules, Rules, Rules • How do we manage all of these different sets of rules? • What about conflicting rules? • What organization’s set of rules takes precedence over another set? • How are rules made/changed?

17. The North American Association of Central Cancer Registries • Established in 1987 to meet the needs of central cancer registries • Forum used by central registries to resolve conflicts, establish shared standards, and improve quality • Coordinates standards through the Uniform Data Standards Committee

18. Process for Change

19. Uniform Data Standards Committee of NAACCR • Compiles coding, editing and data exchange standards. • By agreement, items under consideration for change are reviewed by the committee • Committee approves or rejects proposals

20. Standards for Cancer Registries Volume II • Standards for Cancer Registries Volume II Data Standards and Data Dictionary is published by NAACCR • Developed by a subcommittee of the NAACCR Uniform Data Standards Committee • Comprised of members from all three standard setting agencies

21. Maintaining the Codes • Data Sets – data elements to meet requirements • Data sets consist of: • Commission on Cancer (CoC) • Central Cancer Registry (CCR) • NPCR/SEER • Differences in theory

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