June 14th, 2017 by Charlie Blackburn | NAACCReview Home Leave a comment

Eric J. Jacobs, PhD, Strategic Director, Pharmacoepidemiology,
American Cancer Society (NAACCR Member)



A validation study was conducted to compare verified self-reports of cancer diagnoses to information in population based cancer registries. Results demonstrate that linkage with the nationwide network of state cancer registries can be a highly sensitive method of identifying diagnoses of most types of cancer among participants in large nationwide research studies.

For the study, registry staff at 23 state cancer registries conducted standardized linkages with a subset of participants in Cancer Prevention Study 3 (CPS-3), a relatively new American Cancer Society (ACS) study including over 300,000 cancer-free U.S. men and women enrolled in 35 states, the District of Columbia and Puerto Rico. ACS researchers plan to follow CPS-3 participants through linkage with state cancer registries for at least 20 years in order to study how a wide range of lifestyle, nutritional, medical, genetic, environmental, and other factors are related to risk of cancer. To determine the sensitivity of multi-state registry linkage, results of registry linkage were compared to new cancer diagnoses that had been reported by a subset of CPS-3 participants and verified by independent collection and review of medical records. Overall, 89% of verified self-reported cancer diagnoses were successfully detected by registry linkage. After excluding melanoma and hematopoietic cancers, which had lower detection rates and may be underreported to registries, the detection rate was an impressive 94%. The authors note that the public has made a substantial investment in state cancer registries, and that making use of these registries to support multi-state linkages for epidemiologic research studies provides an important additional return on this investment.

Based on the positive results from this validation study, American Cancer Society researchers are now beginning to consider the best way to conduct a second round of follow-up linkages for the CPS-3 cohort. This second follow-up round is planned to include linkages with registries from the 23 states included in the validation study (AZ, CA, CO, CT, GA, IL, IN, MA, MD, MI, MN, MO, NC, NJ, NY, OH, OR, PA, SC, TX, VA, WI, and WA) as well as with the cancer registries of the District of Columbia, Puerto Rico, and 12 additional states (AL, AR, FL, IA, KY, LA, MS, NM, OK, SD, TN, UT). We anticipate that using the new NAACCR Virtual Pooled Registry will improve efficiency and yield even higher match rates in the second round.

Click here to view the article
American Journal of Epidemiology


All states in the United States now have a well-established cancer registry. Linkage with these registries may be a cost-effective method of follow-up for cancer incidence in multi-state cohort studies. However, the sensitivity of linkage with the current network of state registries for detecting incident cancer diagnoses within cohort studies is not well-documented. We examined the sensitivity of registry linkage among 39,368 men and women from 23 states who enrolled in the Cancer Prevention Study-3 cohort from 2006-2009 and had the opportunity to self-report cancer diagnoses on a questionnaire in 2011. All participants provided name and birthdate and 94% provided a complete social security number. Of 378 cancer diagnoses between enrollment and 2010 identified through self-report and verified with medical records, 338 were also detected by linkage with the 23 state cancer registries (89% sensitivity, 95% confidence interval (CI): 86%, 92%). Sensitivity was lower for hematologic cancers (69%, 95% CI: 41%, 89%) and melanoma (70%, 95% CI: 57%, 81%). After excluding hematologic cancers and melanoma, sensitivity was 94% (95% CI: 91%, 97%). Our results indicate that linkage with multiple cancer registries can be a sensitive method for ascertaining incident cancers, other than hematologic cancers and melanoma, in multi-state cohort studies.

The opinions expressed in this article are those of the authors and may not represent the official positions of NAACCR.

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