BACKGROUND:Linking cancer cohort participants to state cancer registries typically relies on personally identifiable information, including social security numbers (SSN), which uniquely identify individuals. However, complete SSN collection can be limited due to privacy concerns. This study evaluates the sensitivity of cancer registry linkage using partial or missing SSN and examines differences by demographic characteristics. METHODS:Using data from 284,361 participants in the Cancer Prevention Study-3, we conducted probabilistic linkages with cancer registries in Georgia, Ohio, and Texas using Match*Pro software. Participants were linked using combinations of personally identifiable information: complete SSN, partial SSN (last four digits), and missing SSN. We compared the sensitivity of linkages before and after manual review and stratified by sex, age, and race-ethnicity. RESULTS:Before manual review, the sensitivity for missing and partial SSNs was 92.5%. Sensitivity improved to 98.6% for missing SSN and 98.8% for partial SSN after manual review. We observed no notable heterogeneity by sex, age, or race-ethnicity, with sensitivity exceeding 87% across all subgroups. Manual review substantially reduced uncertain matches, contributing to high linkage accuracy. CONCLUSION:This study demonstrates that high sensitivity in cancer registry linkage can be achieved without a complete SSN, provided other personally identifiable information (e.g., name, date of birth, longitudinal address) is available. These findings support the feasibility of accurate cancer case identification in cohorts with limited SSN data, particularly for historically marginalized populations, and underscore the importance of designing inclusive population-based cancer studies.
Documents sent to hospitals to collect tumor samples for the Cancer Prevention Study-II Nutrition Cohort Colorectal Tissue Repository.
Abstract Background. Racism is a fundamental driver of health inequities, perpetuating systemic disadvantages that disproportionately impact marginalized communities. Structural racism affects multiple domains of an individual’s life, including housing, education, health, and employment. Recent studies have leveraged census data to examine the impact of racism—typically captured using area-level factors such as residential racial segregation and neighborhood socioeconomics—on health outcomes, including cancer. However, these studies often fail to capture the complex multidimensional mechanisms by which structural racism uniquely impacts minoritized groups and seldom consider facilitators of resilience, which may better inform interventions. Purpose. Large-scale contemporary cohort studies are needed to understand the drivers of social determinants of health and their potential impact on cancer. The American Cancer Society (ACS) has committed to establishing a US cohort of at least 100,000 Black women to understand multi-level drivers of cancer development and outcomes. Approach. ACS investigators have implemented a culturally sensitive approach that recognizes and validates the experiences of Black women, actively centering them in the design process. Relying on the principles of accountability, rigor, transparency, and impact to guide decision making, the research team has addressed novel challenges around eligibility, recruitment, and retention. ACS investigators considered the mechanisms and frequency of engagement to ensure meaningful participation. They designed survey tools to assess known drivers of cancer and non-cancer outcomes but reflect an understanding of the interconnected systems of oppression that uniquely impact marginalized communities. The research team has also taken steps to address expectations around the collection of biospecimens, recognizing the importance of establishing trust and respecting individual choice. Outcomes. The study population will be comprised of Black women between the ages of 25 and 55 years who reside in the District of Columbia or one of 20 US states. The ACS will partner with organizations primarily representing or serving the target population to identify interested participants. Study activities will be conducted through an online portal optimized for mobile use. Through the portal, interested individuals will complete an electronic eligibility survey, review the informed consent, and complete the 60-minute baseline survey. Follow-up questionnaires will be sent to participants twice per year for at least 30 years to track exposure and health outcomes and their lived experiences. Enrollment will take place in two pilot markets in Fall 2023 to test the feasibility of the recruitment, e-consent, and e-surveys with anticipated full-scale launch and biospecimen substudy in 2024. Conclusions. In designing a cohort of 100,000 Black women, ACS investigators aim to amplify the VOICES of Black women—honoring their lived experience and strengthening partnerships in the community for long-term health improvements. Citation Format: Lauren E. McCullough, Lauren R. Teras, Anusila Deka, Elizabeth G. Kirkland, Jeshondria McCray, Holly Vins, Jeuneviette E. Bontemps-Jones, Alpa V. Patel. Towards cancer health justice: Considerations in designing a US cohort of 100,000 Black women [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B140.
The rapid pace of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2; COVID-19) pandemic presents challenges to the real-time collection of population-scale data to inform near-term public health needs as well as future investigations. We established the COronavirus Pandemic Epidemiology (COPE) consortium to address this unprecedented crisis on behalf of the epidemiology research community. As a central component of this initiative, we have developed a COVID Symptom Study (previously known as the COVID Symptom Tracker) mobile application as a common data collection tool for epidemiologic cohort studies with active study participants. This mobile application collects information on risk factors, daily symptoms, and outcomes through a user-friendly interface that minimizes participant burden. Combined with our efforts within the general population, data collected from nearly 3 million participants in the United States and United Kingdom are being used to address critical needs in the emergency response, including identifying potential hot spots of disease and clinically actionable risk factors. The linkage of symptom data collected in the app with information and biospecimens already collected in epidemiology cohorts will position us to address key questions related to diet, lifestyle, environmental, and socioeconomic factors on susceptibility to COVID-19, clinical outcomes related to infection, and long-term physical, mental health, and financial sequalae. We call upon additional epidemiology cohorts to join this collective effort to strengthen our impact on the current health crisis and generate a new model for a collaborative and nimble research infrastructure that will lead to more rapid translation of our work for the betterment of public health.
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 multistate 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 during 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 (sensitivity of 89%, 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 multistate cohort studies.
Abstract Background: To better understand colorectal cancer etiology and prognosis, archived surgical tissues were collected from Cancer Prevention Study II (CPS-II) Nutrition Cohort participants who were diagnosed with colorectal cancer. Herein, the methodology for this collection is described to help inform other efforts to collect tissues. Methods: The main components to accruing tissue were: (i) obtaining consent from participants or next-of-kin; (ii) contacting hospitals to request materials; and (iii) pathology review and laboratory processing. Results: In CPS-II, we identified 3,643 participants diagnosed with colorectal cancer between 1992/1993 and 2009. Of these, tissue could not be sought from cases verified through state cancer registry linkage (N = 1,622), because of insufficient information on tissue location. We sought tissue from the 2,021 cases verified using medical records, and received tissue from 882. When hospitals were contacted within 10 years of diagnosis, we received 87% of tissue materials; beyond that 10-year mark, we received 32%. Compared with the 2,761 colorectal cancer cases without tissue, the 882 cases with tissue were more likely to be alive, diagnosed more recently during follow-up, and had less-advanced staged disease. Cases with and without tissues were similar with respect to age at diagnosis, smoking, body mass index, physical activity, and other epidemiologic factors. Conclusions: Some of the most important elements in forming a tissue repository included having the cases' hospital contact and surgical accession information as well as contacting patients/next-of-kin and hospitals within 10 years of surgery. Impact: This tissue repository will serve as an important resource for colorectal cancer studies. See all the articles in this CEBP Focus section, “Biomarkers, Biospecimens, and New Technologies in Molecular Epidemiology.” Cancer Epidemiol Biomarkers Prev; 23(12); 2694–702. ©2014 AACR.
BACKGROUND:An international panel of experts characterized the evidence linking alcoholic beverage consumption to pancreatic cancer as limited. Primary concerns include inconsistent results from underpowered studies, residual confounding by smoking, and the question of whether the association varies by type of alcoholic beverage.METHODS:The association of alcohol intake with pancreatic cancer mortality was examined using data from the Cancer Prevention Study II, a prospective study of US adults 30 years and older. Alcohol consumption was self-reported on a 4-page questionnaire in 1982. Based on follow-up through December 31, 2006, there were 6847 pancreatic cancer deaths among 1,030,467 participants. Multivariable-adjusted relative risks (RRs) and 95% confidence intervals (CIs) were computed using Cox proportional hazards regression analysis controlling for age, sex, race/ethnicity, education, marital status, body mass index, family history of pancreatic cancer, and personal history of gallstones, diabetes mellitus, or smoking.RESULTS:The RRs (95% CIs) of pancreatic cancer mortality associated with current intake of less than 1, 1, 2, 3, and 4 or more drinks per day compared with nondrinkers were 1.06 (0.99-1.13), 0.99 (0.90-1.08), 1.06 (0.97-1.17), 1.25 (1.11-1.42), and 1.17 (1.06-1.29), respectively (P< .001 for trend). Consumption of 3 or more drinks per day was associated with pancreatic cancer mortality in never smokers (RR, 1.36; 95% CI, 1.13-1.62) and in ever smokers (RR, 1.16; 95% CI, 1.06-1.27). This association was observed for consumption of liquor (RR, 1.32; 95% CI, 1.10-1.57) but not beer (RR, 1.08; 95% CI, 0.90-1.30) or wine (RR, 1.09; 95% CI, 0.79-1.49).CONCLUSION:These results strengthen the evidence that alcohol consumption, specifically liquor consumption of 3 or more drinks per day, increases pancreatic cancer mortality independent of smoking.
The obesity epidemic is attributed in part to reduced physical activity. Evidence supports that reducing time spent sitting, regardless of activity, may improve the metabolic consequences of obesity. Analyses were conducted in a large prospective study of US adults enrolled by the American Cancer Society to examine leisure time spent sitting and physical activity in relation to mortality. Time spent sitting and physical activity were queried by questionnaire on 53,440 men and 69,776 women who were disease free at enrollment. The authors identified 11,307 deaths in men and 7,923 deaths in women during the 14-year follow-up. After adjustment for smoking, body mass index, and other factors, time spent sitting (> or = 6 vs. <3 hours/day) was associated with mortality in both women (relative risk = 1.34, 95% confidence interval (CI): 1.25, 1.44) and men (relative risk = 1.17, 95% CI: 1.11, 1.24). Relative risks for sitting (> or = 6 hours/day) and physical activity (<24.5 metabolic equivalent (MET)-hours/week) combined were 1.94 (95% CI: 1.70, 2.20) for women and 1.48 (95% CI: 1.33, 1.65) for men, compared with those with the least time sitting and most activity. Associations were strongest for cardiovascular disease mortality. The time spent sitting was independently associated with total mortality, regardless of physical activity level. Public health messages should include both being physically active and reducing time spent sitting.
BACKGROUND & AIMS:Type 2 diabetes mellitus (DM) is associated with an increased risk of colorectal cancer (CRC); it is not clear if this association varies by sex or other factors. Insulin use might also be associated with CRC risk. We investigated associations of type 2 DM and insulin use with CRC risk.METHODS:The Cancer Prevention Study II Nutrition Cohort is a prospective study of cancer incidence. In 1992 or 1993, adult participants (n = 184,194) completed a detailed, self-administered questionnaire. Follow-up questionnaires were sent in 1997 and every 2 years thereafter. Cox proportional hazards regression analysis was used to calculate relative risks (RR) and 95% confidence intervals (CI), adjusting for covariates.RESULTS:After exclusions, 73,312 men and 81,663 women remained in the final analytic cohort; 1567 men (227 with type 2 DM) and 1242 women (108 with type 2 DM) were diagnosed with colon or rectal cancer by 2007. Among men, type 2 DM was associated with increased risk of incident CRC compared to not having type 2 DM (RR: 1.24; 95% CI: 1.08-1.44); risk was higher for participants with type 2 DM using insulin (RR: 1.36; 95% CI: 1.05-1.78), and participants with type 2 DM not using insulin (RR: 1.22, 95% CI: 1.04-1.45). Among women, type 2 DM and insulin use were not associated with risk of incident CRC (RR: 1.01; 95% CI: 0.82-1.23 and RR: 0.95; 95% CI: 0.64-1.41, respectively).CONCLUSIONS:There is a modest association between type 2 DM and CRC among men, but not women. Insulin use is not associated with a substantially increased risk of CRC.
Abstract Background: Diabetes is associated with a modest increased risk of colorectal cancer (CRC). Evidence also indicates that high endogenous insulin and glucose levels are associated with increased risk of CRC. However, few studies have evaluated whether exogenous insulin, used to treat diabetes, is associated with risk of CRC, and one of these studies reported strongly increased risk among diabetics who had used insulin. Further, few studies have examined the association between diabetes and risk of CRC by gender, tumor phenotype (e.g., sub-site, stage) and other factors, that may be relevant to the etiology of CRC. Methods: The CPS II Nutrition Cohort is a prospective study of cancer incidence including approximately 184,000 U.S. adults aged 50 to 75 at enrollment in 1992-93. At enrollment, participants completed a detailed self-administered questionnaire that included information on demographic, medical, lifestyle, and dietary factors. The questionnaire asked if a participant had been diagnosed by a physician with diabetes mellitus and if the participant was taking insulin to treat the disease. Follow-up questionnaires were sent to cohort members in 1997, and every two years thereafter to update exposure information, including diabetes and insulin-use, and to learn of incident cancers. Colorectal cancer cases in the current study were identified by linkage with the National Death Index (NDI) or by self-reports, subsequently verified by medical record abstraction or linkage with state cancer registries. Results: After exclusions, 73,328 men and 81,670 women remained in the final analytic cohort, of whom 1,444 men and 1,154 women were diagnosed with colon or rectal cancer between enrollment and the end of follow-up in 2007. Among female participants, diabetes and insulin-use were not associated with incident colorectal cancer overall (Relative Risk (RR): 0.98; 95% Confidence Interval (CI): 0.79-1.22 and RR: 0.92; 95% CI: 0.61-1.40, respectively) or when stratified by tumor sub-site in the colon or rectum, stage of disease, or fatality. Among male participants, both diabetes and insulin-use were associated with modestly increased risk of incident colorectal cancer (RR: 1.25; 95% CI: 1.08-1.46 and RR: 1.35; 95% CI: 1.02-1.78, respectively). There were no clear differences in associations with diabetes by subsite or stage. Duration of diabetes was linearly associated with CRC risk among men (p-trend: 0.0002), but not women. Duration of insulin-use was not linearly associated with CRC risk in men or women. Conclusions: Our results from a large U.S. prospective study confirm a modest association between diabetes and colorectal cancer risk among men but not among women. Reasons for these differences are unclear but might be due to sex-differences in hormones or better glucose control among women than men. Our results also suggest that exogenous insulin-use is unlikely to substantially increase risk of colorectal cancer among diabetics. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 101st Annual Meeting of the American Association for Cancer Research; 2010 Apr 17-21; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2010;70(8 Suppl):Abstract nr 1841.
To examine the association between use of anti-hypertensive drugs and prostate cancer incidence among 48,389 men in the Cancer Prevention Study II Nutrition Cohort.
Background: Studies of postmenopausal hormone therapy and lung cancer incidence have reported positive, negative, and null associations. Most of these studies, however, have had limited ability to control rigorously for cigarette smoking or to examine risk separately by smoking status. Methods: We examined the association between postmenopausal hormone therapy and lung cancer incidence by smoking status among 72,772 women in the Cancer Prevention Study II Nutrition Cohort. Proportional hazards modeling was used to calculate rate ratios (RR). Results: During follow-up from 1992 to 2003, we identified 659 cases of incident lung cancer. Current use of any postmenopausal hormone therapy was significantly associated with decreased risk of incident lung cancer [multivariate RR, 0.76; 95% confidence interval (95% CI), 0.62-0.92]. Similar risk estimates were observed for unopposed estrogen use (RR, 0.76; 95% CI, 0.60-0.94) and for estrogen plus progestin (RR, 0.76; 95% CI, 0.57-1.01). Risk associated with current use of postmenopausal hormone therapy was decreased among never smokers (RR, 0.56; 95% CI, 0.33-0.95) as well as current smokers (RR, 0.76; 95% CI, 0.55-1.05) and former smokers (RR, 0.76; 95% CI, 0.58-0.99). Former hormone use was not associated with lung cancer. No trend with duration of hormone use was detected. Conclusion: These results support the hypothesis that postmenopausal hormone therapy is associated with reduced risk of lung cancer, although the absence of a dose-response relationship weakens the evidence for causality. (Cancer Epidemiol Biomarkers Prev 2008;17(3):655–60)
BACKGROUND:Obesity has been associated with aggressive prostate cancer. The extent of this association, which varies by stage and grade, remains unclear. The role of recent weight change had not been previously examined. METHODS:We examined body mass index (BMI) and weight change in relation to incident prostate cancer by disease stage and grade at diagnosis among 69,991 men in the Cancer Prevention Study II Nutrition Cohort. Participants provided information on height and weight in 1982, and again at enrollment in 1992. During follow-up through June 30, 2003 (excluding the first 2 years of follow-up), we documented 5,252 incident prostate cancers. Cox proportional hazards models were used to estimate rate ratios (RR) and 95% confidence intervals (95% CI). RESULTS:The association between BMI in 1992 and risk of prostate cancer differed by stage and grade at diagnosis. BMI was inversely associated with risk of nonmetastatic low-grade prostate cancer (RR, 0.84; 95% CI, 0.66-1.06), but BMI was positively associated with risk of nonmetastatic high-grade prostate cancer (RR, 1.22; 95% CI, 0.96-1.55) and risk of metastatic or fatal prostate cancer (RR, 1.54; 95% CI, 1.06-2.23). Compared with weight maintenance, men who lost >11 pounds between 1982 and 1992 were at a decreased risk of nonmetastatic high-grade prostate cancer (RR, 0.58; 95% CI, 0.42-0.79). CONCLUSION:Obesity increases the risk of more aggressive prostate cancer and may decrease either the occurrence or the likelihood of diagnosis of less-aggressive tumors. Men who lose weight may reduce their risk of prostate cancer.