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Cancer Causes Control. 2019 Jan;30(1):21-29. doi: 10.1007/s10552-018-1091-3. Epub 2018 Nov 3.

Concordance of cancer registry and self-reported race, ethnicity, and cancer type: a report from the American Cancer Society's studies of cancer survivors.

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Metabolic Epidemiology Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, 9609 Medical Center Drive, Room 6E324, MSC 9768, Bethesda, MD, 20892, USA.
Department of Chronic Disease Epidemiology, Yale Comprehensive Cancer Center, Yale School of Public Health, 55 Church Street, Suite 801, New Haven, CT, 06510, USA.
Behavioral and Epidemiology Research Group, American Cancer Society, 250 Williams Street, Atlanta, GA, 30303, USA.
Connecticut Tumor Registry, Connecticut Department of Public Health, 410 Capitol Avenue, MS# 13TMR, Hartford, CT, 06134-0308, USA.



To examine the concordance between cancer registry and self-reported data for race, Hispanic ethnicity, and cancer type in the American Cancer Society's Studies of Cancer Survivors (SCS) I and II.


We calculated sensitivity, specificity, positive predictive value, and Kappa statistics for SCS-I and II. The gold standard for cancer type was registry data and for race and ethnicity was self-reported questionnaire data.


Among 6,306 survivors in SCS-I and 9,170 in SCS-II, overall agreement (Kappa) for cancer type was 0.98 and 0.99, respectively. Concordance was strongest for breast and prostate cancer (Sensitivity ≥ 0.98 in SCS-I and II). For race, Kappa was 0.85 (SCS-I) and 0.93 (SCS-II), with strong concordance for white (Sensitivity = 0.95 in SCS-I and 0.99 in SCS-II) and black survivors (Sensitivity = 0.94 in SCS-I and 0.99 in SCS-II), but weak concordance for American Indian/Alaska Native (Sensitivity = 0.23 in SCS-I and 0.19 in SCS-II) and Asian/Pacific Islander survivors (Sensitivity = 0.43 in SCS-I and 0.87 in SCS-II). Agreement was moderate for Hispanic ethnicity (Kappa = 0.73 and 0.71; Sensitivity = 0.74 and 0.76, in SCS-I and SCS-II, respectively).


We observed strong concordance between cancer registry data and self-report for cancer type in this national sample. For race and ethnicity, however, concordance varied significantly, with the poorest concordances observed for American Indian/Alaska Native and Asian/Pacific Islander survivors. Ensuring accurate recording of race/ethnicity data in registries is crucial for monitoring cancer trends and addressing cancer disparities among cancer survivors.


Cancer registries; Cancer survivors; Disparities; Ethnicity; Race; Self-report

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