Reflections of Reflections of ChangeChangebybyRyan Intlekofer, RN, CTRRyan Intlekofer, RN, CTR

Division of Cancer Prevention and ControlDivision of Cancer Prevention and ControlNational Center for Chronic Disease Prevention and National Center for Chronic Disease Prevention and

Health PromotionHealth PromotionCenters for Disease Control and Prevention (CDC)Centers for Disease Control and Prevention (CDC)

department of health and human resources

The JourneyThe Journey Where we startedWhere we started

Where we areWhere we are

Where are we going ?Where are we going ?

Beginning History of Beginning History of Cancer RegistrationCancer Registration

EuropeEuropeCancer was first documented as a cause Cancer was first documented as a cause of death in 1629 in the “Bills of Mortality”of death in 1629 in the “Bills of Mortality”published annually in England.published annually in England.

The first known systematic collection of The first known systematic collection of information on cancer was the general information on cancer was the general census of cancer in London – 1728census of cancer in London – 1728

History of Cancer History of Cancer Registration in the U.S.Registration in the U.S.

1913 – North American Surgeons1913 – North American Surgeons 1930 – Hospital Based Registries1930 – Hospital Based Registries 1932 – ACoS Published First Standards1932 – ACoS Published First Standards 1933 – 140 Cancer Clinics were 1933 – 140 Cancer Clinics were

approved by the ACoSapproved by the ACoS 1941 – Connecticut Cancer Registry 1941 – Connecticut Cancer Registry

InventionsInventions

1938 – ball point pen1938 – ball point pen

Setting StandardsSetting Standards 1956 – CoC approval standards were 1956 – CoC approval standards were

revised and cancer registries were revised and cancer registries were designated as mandatory components of designated as mandatory components of Commission approved cancer programs.Commission approved cancer programs.

1950’s – Also marked the beginning of 1950’s – Also marked the beginning of the End Results Program. Continuous the End Results Program. Continuous collation of cancer registry data was collation of cancer registry data was begun.begun.

Continued ExpansionContinued Expansion 1973 – SEER program1973 – SEER program 1974 – NCRA1974 – NCRA 1983 – CTR credentialing1983 – CTR credentialing 1989 – National Cancer Data Base1989 – National Cancer Data Base 1990 – NAACCR1990 – NAACCR 1992 – NPCR1992 – NPCR

SEERSEER Established in 1973Established in 1973

Case ascertainment began in the states of Case ascertainment began in the states of Connecticut, Iowa, New Mexico, Utah, and Connecticut, Iowa, New Mexico, Utah, and Hawaii, and the metropolitan areas of Detroit Hawaii, and the metropolitan areas of Detroit and San Francisco-Oakland. and San Francisco-Oakland. 14% population coverage14% population coverage

SEER Expansion – CurrentSEER Expansion – Current26% population coverage26% population coverage

NCRA – CTRNCRA – CTR Established in 1974Established in 1974

2004 – 4,000 members 2004 – 4,000 members Education Foundation establishedEducation Foundation established

CTRCTR Paper to Web-based examPaper to Web-based exam

NCDBNCDB Established in 1989 to serve as a Established in 1989 to serve as a

comprehensive clinical surveillance comprehensive clinical surveillance resource about cancer care in the US.resource about cancer care in the US.

First used to track and compare First used to track and compare treatment of most types of cancer.treatment of most types of cancer.

Data CycleData Cycle

North American Association North American Association of Central Cancer Registries of Central Cancer Registries (NAACCR)(NAACCR)

Uniform data standardsUniform data standards Education and trainingEducation and training CertificationCertification Data aggregation and publicationData aggregation and publication Promotion of cancer surveillance data Promotion of cancer surveillance data

useuse

National Program of National Program of Cancer Registries (NPCR)Cancer Registries (NPCR)

1995+1995+

45 States, 3 territories, 45 States, 3 territories, District of ColumbiaDistrict of Columbia

96% population 96% population coveragecoverage

SEERNPCRNPCR/SEER

Additional Tools Additional Tools SEER Self Instructional ManualsSEER Self Instructional Manuals ICD-0ICD-0 SEER Program Code ManualSEER Program Code Manual SEER Extent of Disease ManualSEER Extent of Disease Manual SEER Summary Staging ManualSEER Summary Staging Manual AJCC Cancer Staging ManualAJCC Cancer Staging Manual CoC DAM, ROADS and FORDSCoC DAM, ROADS and FORDS

Cancer Data CollectionCancer Data Collection What changes have been made in What changes have been made in

cancer data collection?cancer data collection? Fountain pen to ballpoint penFountain pen to ballpoint pen Card files to computer generated suspense Card files to computer generated suspense

listslists Paper abstracts to computer database filesPaper abstracts to computer database files Manually counting numbers of cases to Manually counting numbers of cases to

computer generated totalscomputer generated totals

ComputerizationComputerization Personal computersPersonal computers Cancer Registry SoftwareCancer Registry Software DOS to Windows DOS to Windows NetworksNetworks LinkagesLinkages

Where are we nowWhere are we now 2001 – ICD-O 3 Implemented new case 2001 – ICD-O 3 Implemented new case

reportability standards for the reportability standards for the hematopoietic diseases hematopoietic diseases

2004 – Benign Brain Reporting2004 – Benign Brain Reporting 2004 – Collaborative Stage Reporting2004 – Collaborative Stage Reporting

Data SubmissionData Submission

SEERNPCR NAACCR

State Cancer State Cancer Registry Registry

Hospital Cancer Hospital Cancer

RegistryRegistry

Where are we going?Where are we going?

Contact InformationContact Informationrbi1rbi1@cdc.gov770-488-1075770-488-1075