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Surveillance, Epidemiology and End Results (SEER) Program NAS 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 6 1 1 1 2 2 4 1 2 1 9.5% of U.S. population 19732 3 3 3 4 26% of U.S. population 20014 Greater Georgia 3 Alaska Native Tumor Registry Kentucky, Louisiana, New Jersey, and the Remainder of California California--Los Angeles and San Jose-Monterey 2 Rural Georgia Region CT, IA, UT and HI; and the Metro Areas of Detroit and San Francisco-Oakland Seattle-Puget Sound and Metropolitan Atlanta National Cancer Act of 1971 SEER Timeline and Database Groupings 5 7 6 3 SEER Databases 4 14% of U.S. population 19925 6 5 6 28% of U.S. population 20107 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 8 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 Requirements Data Quality Marker 1. Death Certificate only 2. Cause of death missing for patients known to be dead 3. Unknown or ill-defined primary site 4. Non-specific histology 5. Unknown laterality 6. Unknown historic stage 7. Invalid or missing census tract 8. SEER estimated completeness 9. Percent Complete as of February 2009 10. 1 year reporting delay 11. Follow-up age < 20 12. Follow-up age 20-64 13. 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 11 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. 12 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 13 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/nuclearpower-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. 15 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 16 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 17 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 parttime 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. 19 SEER: 2010 Geocoding Accuracy (2007 Data) Urban Rural 20 Surveillance, Epidemiology and End Results Program Case Ascertainment National Center for Health Statistics Demographics U.S. Census Bureau Population counts, Bridged pops, & County attributes Mortality files Stage, Histology, Treatment Data Survival Reports Multi‐tiered Data Collection Case Records Patterns of Care Studies Data Quality Profile 18 SEER Registries SEER*DMS Cases in 2010 database: 6.1 million Items in SEER bibliography: 6,934 •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 •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*Stat •Joinpoint •Delay Adjustment •VA Case Adjustment •CanSurv •ComPrev •HD*Calc SEER Manuals SEER Online Training Quality Studies: Web‐based Reliability, Case‐finding, etc. 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 23 Commentary Annual Report to the Nation on the Status Of Cancer, 1975-2007, Featuring Tumors of the Brain and Other Nervous System Cancers 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 Volume 103/Issue 3 April 20, 2011 Pages 1-23 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 25