Surveillance, Epidemiology and End Results (SEER)

ProgramNAS Committee on Analysis of

Cancer Risks in Populations around Nuclear Facilities

May 23, 2011

Kevin Ward on behalf of: Brenda K. Edwards

Surveillance Research Program, NCI

SEER: Monitoring Progress in Reducing the Cancer Burden

• Longitudinal surveillance & clinical relevance– All sites, common or rare– All populations, by age, sex, race & ethnicity,

geography– Evaluating the impact of public health interventions

• Unusual cancer patterns– Rapid changes in incidence

• Relevance to etiology• Relevance to public health

Surveillance, Epidemiology and End Results (SEER) Program

SEER: Monitoring Progress in Reducing the Cancer Burden

• 18 Cancer Registries– Collect incidence and survival data– SEER Data Management System includes

SEER*DMS, SEER*Abs, SEER*Edits• Annually report incidence, survival,

mortality (from NCHS), and prevalence– Online data resources– Public-use research file available online– Data used in research: almost 7,000

publications in the SEER Bibliography 5

SEER Data• SEER Registries collect data on

• patient demographics– age, sex, race & ethnicity, geography– Ages that are grouped: <1, 1-4, 85+

• primary tumor site• tumor morphology/histology• stage at diagnosis• first course of treatment• follow-up for vital status

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SEER Timeline and Database GroupingsN

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9.5% of U.S. population 1973-

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14% of U.S. population 1992-

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26% of U.S. population 2001-

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28% of U.S. population 2010-

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5

5

SEER Databases

SEER Data Quality Profile(DQP)

• All SEER registries• 14 or more data quality markers• Annual assessment• Contractually required goals• SEER*Edits—a key to quality

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SEER*Edits

• Computerized edits that test the validity of data fields-- executed each time a user opens, validates, or saves a record or patient set in SEER*DMS

• Includes registry-specific edits defined and maintained by registry staff

• A patient set will not exit the workflow until all edits are cleared 9

SEER*Edits (cont’d)n=610

• 205 Field Edits: Every data element is checked for valid values

• 382 Inter-Field Edits: Compare data in one field with other fields, e.g., sex and site would not allow a male with ovarian cancer

• 23 Inter-Record Edits: Compare information between records for multiple primaries, e.g. a person must have the same race for all primaries 10

SEER DQP RequirementsData Quality Marker

1. Death Certificate only2. Cause of death missing for patients known to

be dead 3. Unknown or ill-defined primary site 4. Non-specific histology 5. Unknown laterality6. Unknown historic stage7. Invalid or missing census tract8. SEER estimated completeness 9. Percent Complete as of February 200910. 1 year reporting delay11. Follow-up age < 2012. Follow-up age 20-6413. Follow-up age 65+14. Follow-up all in situs•

Goal< 1.5 % and > 0.0 %< 2.5%

< 2.5%< 2.5%< 6.0%< 10.0%< 2.0%> 98.0%> 95.0%< 2.5%> 90*; > 80**> 90*; > 80**> 95*; > 90**> 90*; > 80*** Contractual standard**Minimum acceptable

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Coding Changes• Incidence data are collected based on the

International Classification of Diseases for Oncology which is an expansion of the ICD codes. There have been 3 revisions: ICD-O-3

• Site recodes for site/histology groupings that have stayed fairly consistent over time.

• SEER also has a recode to eliminate cases from trend analyses that haven't been collected consistently over time.

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SEER Study Examples

• Kaposi’s sarcoma in San Francisco• Estrogen and endometrial cancer• Cancer incidence among immigrant

families• ETS (environmental tobacco smoke) and

lung cancer (Surgeon General’s report)• Patterns of Care/Quality of Care• SEER-Medicare database

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NCI Studies of Radiation Exposure• NCI Division of Cancer Epidemiology and

Genetics (DCEG) – Radiation Epidemiology Branch

http://dceg.cancer.gov/reb• Atomic Bomb Survivors• Chernobyl• Semipalatinsk Nuclear Test Site, Kazakhstan• Techa River, Nuclear Weapons Waste

• NCI fact sheet: “Accidents at Nuclear Power Plants and Cancer Risk” provides links to studies: http://www.cancer.gov/cancertopics/factsheet/Risk/nuclear-power-accidents 14

SEER: Geographic Level of Data• Registries collect state, county, zip code, and

address - they derive census tract. • Registries transmit geocoded data to NCI SEER:

SEER registry, county, census tract, and census tract certainty.

• Version of census tract is dependent on the year of diagnosis, i.e., 1970, 1980, 1990, 2000, 2010.

• The census tract variables are removed from the SEER public-use research file due to the confidentiality concerns of small area analysis.

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SEER: Geographic Level of Data• Identifiers are removed from SEER

analytic files• Individual addresses must be

requested from the state registries• Registry requirements may vary

– May require study protocol– Will require IRB approval– Time to receive data will vary

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State Registry Research Requirements

NAACCR website in development for researcher information on accessing data from U.S. and Canadian Registries

http://www.naaccr.org/Research/ResearchByRegistry.aspx

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SEER: Crossing State Lines• Incidence: Based on residency in a SEER

geographic catchment area at time of diagnosis.• Mortality: Linkage with the National Death

Index (NDI) captures out-of-state deaths.• Registries have data-sharing agreements

with neighboring states & states with many part-time residents (eg., FL). Can cause reporting delays and extra work to consolidate record.

• Issue for SEER: Incidence of multiple cancers, if person moves to non-SEER state between diagnoses of different cancers. 18

SEER: Geocoding Accuracy• In recognition of the increasing importance of geographic

data, NCI SEER is continuing to evaluate additional metrics to assess accuracy.

• Separate quality standards are being tested for rural and urban areas. A standard of at least 90% high quality census tract certainty codes for urban areas and a standard of at least 80% high quality census tract certainty codes for rural areas.

• Before implementation, NCI SEER will evaluate the definitions of “rural” and “urban.” Adjustment may be needed to reflect the populations in SEER areas.

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SEER: 2010 Geocoding Accuracy(2007 Data)

Urban Rural

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Multi‐tiered Data 

Collection

Surveillance, Epidemiology and End Results Program

Data

•SEER*Stat•SEER Public‐Use Research Files•Online Statistical Fact Sheets•Online Fast*Stats•Data Documentation & Variable Recodes•Rapid Response Special Studies•State Cancer Profiles

Reports

•Annual Report to the Nation (With CDC, ACS, NAACCR, others)•SEER Cancer Statistics Review•US Cancer Statistics (with CDC)•Cancer Facts & Figures (with ACS)•Cancer in North America (with NAACCR)•Cancer in Five Continents (with WHO/IARC)•Cancer Trends Progress Report•Monographs

Research Databases & Linkages

•SEER‐Medicare•State Cancer Profiles•National Longitudinal Mortality Study•Residual Tissue Repository

Data Analysis Tools 

SEER  Online Training

Cases in 2010 database: 6.1 millionItems in SEER bibliography: 6,934

•SEER*Stat•Joinpoint•Delay Adjustment•VA Case Adjustment•CanSurv•ComPrev•HD*Calc

National Center for Health Statistics

18 SEER RegistriesSEER*DMS

Data Quality Profile

Patterns of Care StudiesCase Records

Demographics

Stage, Histology, Treatment

Survival

Population counts,Bridged pops,& County attributes

Mortality files

U.S. Census Bureau

Quality Studies: Web‐based Reliability, Case‐finding, 

etc.

SEERManuals

Case Ascertainment

National Surveillance Partners• NCDB – Established 1989

• Hospital-based registries report data to the central registries.

• NAACCR – Established 1989• Establishes & maintains a consensus on standards for cancer registration.

• ACS• Publishes Cancer Facts & Figures annually, based on registry data and NCI

methodology for prediction of cases.

• NPCR – Established 1992• Collects cancer incidence data from 45 states, the District of Columbia, and

Puerto Rico; supports registry development in the U.S. Pacific Island Jurisdictions.

• NCHS• Provides vital statistics, including U.S. mortality data for SEER reporting. 22

National Surveillance Partners

• Collaborative activities– “Annual Report to the Nation on the Status of

Cancer”– US Cancer Statistics– ACS Cancer Facts & Figures– NAACCR Committees & CINA/CINA Deluxe– State Cancer Profiles– Coding System for Collaborative Stage– SEER+ quality improvement studies

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Commentary

Annual Report to the Nation on the Status Of Cancer, 1975-2007, Featuring Tumors of the Brain and Other Nervous System Cancers

Volume 103/Issue 3April 20, 2011Pages 1-23

Betsy A. Kohler, Elizabeth Ward, Bridget J. McCarthy, Maria J. Schymura, Lynn A. G. Ries, Christie Eheman, Ahmedin Jemal, Robert N. Anderson, Umed A. Ajani, and Brenda K. Edwards

Online print March 31, 2011

Lung cancer death rates decreased in women for the first time during 2003–2007, more than a decade after decreasing in men. During 2004–2007, more than 213 500 primary brain and ONS tumors were diagnosed, and 35.8% were malignant.

State Cancer Profiles

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