Reflections of Change

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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
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The Journey

• Where we started
• Where we are
• Where are we going ?

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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

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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

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Inventions

• 1938 ball point pen

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Setting Standards

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

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Continued Expansion

• 1973 SEER program
• 1974 NCRA
• 1983 CTR credentialing
• 1989 National Cancer Data Base
• 1990 NAACCR
• 1992 NPCR

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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

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NCRA CTR

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

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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

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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

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National Program of Cancer Registries (NPCR)

• 1995
• 45 States, 3 territories, District of Columbia
• 96 population coverage

SEER
NPCR
NPCR/SEER
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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

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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

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Computerization

• Personal computers
• Cancer Registry Software
• DOS to Windows
• Networks
• Linkages

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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

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Data Submission
Hospital Cancer Registry
State Cancer Registry
SEER
NAACCR
NPCR
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Where are we going?
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Contact Information rbi1_at_cdc.gov 770-488-1075