Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology.

Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Re-investment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control.

Years of potential life lost and productivity costs because of cancer mortality and for specific cancer sites where human papillomavirus may be a risk factor for carcinogenesis-United States, 2003.

BACKGROUND: Although years of potential life lost (YPLL) and mortality-related productivity costs comprise a substantial portion of the burden of cancers where human papillomavirus (HPV) may be a risk factor for carcinogenesis (called HPV-associated cancers in this report), estimates of these costs are limited. The authors estimated the mortality-related burden (in terms of YPLL and productivity costs) of HPV-associated cancers (without regard to the percentage of each of these cancers that could be attributed to HPV) and all malignant cancers in the United States in 2003. METHODS: The authors used 2003 national mortality data and US life tables to estimate YPLL for HPV-associated cancers and all malignant cancers. YPLL was estimated by using the life expectancy method. The human capital approach was used to estimate the value of the expected future lifetime productivity losses caused by premature deaths from HPV-associated cancers and all malignant cancers. Indirect mortality costs were estimated as the product of the number of deaths and the expected value of individuals' future earnings, including an imputed value of housekeeping services. RESULTS: In 2003, HPV-associated cancers accounted for 181,026 YPLL, which represented 2.4% of the estimated 7.5 million YPLL attributable to all malignant cancers in the United States. The average number of YPLL was 21.8 per HPV-associated cancer death and 16.3 per death from overall malignant cancers. Overall, HPV-associated cancers had the largest relative contribution to YPLL in women ages 30 to 34 years. The lifetime productivity cost from mortality in 2003 was $3.7 billion for HPV-associated cancer mortality and $133.5 billion for overall malignant cancer mortality. CONCLUSIONS: HPV-associated cancers impose a considerable burden in terms of premature deaths and productivity losses.

Geographic variation in the incidence of colorectal cancer in the United States, 1998-2001.

BACKGROUND: This study examined the incidence rates and risk factors for colorectal cancer in 9 geographic divisions in the United States. METHODS: The colorectal cancer cases were diagnosed between 1998 and 2001 in 39 states and the District of Columbia (grouped into 9 geographic divisions in the United States). The association between colorectal cancer and geographic division was analyzed using the Poisson regression model controlling for demographics and ecologic measures of education, behavioral factors and colorectal cancer screening data extracted from the Behavioral Risk Factor Surveillance System. RESULTS: The age-adjusted incidence rates of colorectal cancer were highest in the Middle Atlantic division, followed by New England division, East and West North Central divisions, East South Central and South Atlantic divisions, West South Central and Pacific divisions, with the lowest rate observed in the Mountain division. Old age, male gender, black race, less than a twelfth-grade education, smoking, and no physical activity were significantly associated with higher incidence rates of colorectal cancer, whereas having sigmoidoscopy/colonoscopy in the past 5 years, fecal occult blood test in the past year, and obesity were associated with lower incidence rates of colorectal cancer. The relative ranking of incidence rates of colorectal cancer across divisions changed after adjusting for these factors. CONCLUSIONS: Significant geographic variation in colorectal cancer exists in the United States. Risk factors, including demographics, education, behavior, and screening use, can only partially explain the differences across geographic divisions.