Ascertainment of incident cancer by US population-based cancer registries versus self-reports and death certificates in a nationwide cohort study, the U.S. Radiologic Technologists Study

Annelie M. Landgren, MPH, PMP [Contractor], Surveillance Research Program, DCCPS, NCI
Martha S. Linet, MD, MPH, Scientist Emerita, Radiation Epidemiology Branch, DCEG, NCI

Ascertainment of incident cancer by US population-based cancer registries versus self-reports and death certificates in a nationwide cohort study, the U.S. Radiologic Technologists Study

Accurate cancer incidence and cause-of-death ascertainment is critical for epidemiological research. Since there is no nationwide cancer registry in the United States, population-based cohort studies often collect these data from participant self-reported cancer and death certificates—a time consuming and costly enterprise. Data from these sources is subject to error and previous investigations to measure error and validity have been limited by linkage to a small number of cancer registries and a relatively short period of follow-up. An analysis of self-reported and death certificate data from the nationwide U.S. Radiologic Technologists (USRT) cohort study revealed a number of shortcomings from those data sources. The authors conclude that a virtual pooled cancer registry could address these gaps. Their findings and conclusions were published online in the American Journal of Epidemiology (Liu D et al;  doi: 10.1093/aje/kwac121).
The entire USRT cohort (N=146,022) was linked with 43 population-based U.S. cancer registries for the period 1999-2012.  Living members who agreed to participate answered questionnaires administered about every 10 years since the mid-1980s. Death certificate data from cohort members were obtained through 3 linkages of the cohort through 2012.  The investigators found sensitivity varied notably by type of cancer. Considering the 8,858 first primary cancers identified from the registries as a gold standard, overall sensitivity was 46.5% for self-reports only (ranging from 102% for the deadliest to 72.4% for cancers with the highest survival rates) and 63.0% for combined self-reports and death certificates. Of the false-negative reports, most were due to subjects not completing questionnaires (27.8%) and to a substantially lesser extent misreporting (9.2%).
Among 90,086 respondents with no record of cancer from registries, self-report and death certificates revealed no record of cancer in 87,831 subjects (specificity of 97.5%). Remaining 2,255 subjects reported a cancer that was not identified in any registry (32.6% of these subjects resided in states/regions not covered by the participating 43 cancer registries). Among the 6,213 self-reported cancers (excluding non-melanoma skin cancer), registries identified 66.2% with the same cancer (concordance or predictive value ranging from 36.8% for melanoma to 81.7% and 77.3% for breast and prostate cancer, respectively), 5.2% with a different cancer, and 28.6% with no cancer.
The findings from this study suggest that National Cancer Institute-supported nationwide virtual pooled cancer registry will substantially improve the completeness and accuracy of cancer case ascertainment as well as the level of cancer characterization detail feasible in U.S. epidemiological observational cohort studies.


Follow-up of US cohort members for incident cancer is time-consuming, is costly, and often results in underascertainment when the traditional methods of self-reporting and/or medical record validation are used. We conducted one of the first large-scale investigations to assess the feasibility, methods, and benefits of linking participants in the US Radiologic Technologists (USRT) Study (n = 146,022) with the majority of US state or regional cancer registries. Follow-up of this cohort has relied primarily on questionnaires (mailed approximately every 10 years) and linkage with the National Death Index. We compared the level of agreement and completeness of questionnaire/death-certificate-based information with that of registry-based (43 registries) incident cancer follow-up in the USRT cohort. Using registry-identified first primary cancers from 1999-2012 as the gold standard, the overall sensitivity was 46.5% for self-reports only and 63.0% for both self-reports and death certificates. Among the 37.0% false-negative reports, 27.8% were due to dropout, while 9.2% were due to misreporting. The USRT cancer reporting patterns differed by cancer type. Our study indicates that linkage to state cancer registries would greatly improve completeness and accuracy of cancer follow-up in comparison with questionnaire self-reporting. These findings support ongoing development of a national US virtual pooled registry with which to streamline cohort linkages.

Incidence of Lung Cancer in Never Smokers Based on Registry Data

Paulo Pinheiro, Associate Professor, University of Miami

Incidence of Lung Cancer in Never Smokers Based on Registry Data

To our knowledge, this is the first-time lung cancer incidence rates for never smokers are estimated based on US registry data. Using Florida data, we found that the overall rates by racial-ethnic group are not too far apart, but Asians and Blacks have higher rates of lung cancer in never smokers (LCNS). When ranked with other cancers, in terms of incidence and mortality, LCNS is the 11th most common cancer in men and the 8th in women. Other interesting findings include:
1.Higher rates of LCNS among young women and older men;
2.LCNS is responsible for more deaths than leukemias or lymphomas among women.
3.LCNS is the second cause of cancer death among Asian American women.
4.LCNS trends are stable, while trends for lung cancer in smokers are decreasing.



Epidemiological patterns for lung cancer among never smokers (LCNS) are largely unknown, even though LCNS cases comprise 15% of lung cancers. Past studies were based on epidemiologic or health system cohorts, and not fully representative of the underlying population. The objective was to analyze rates (and trends) of LCNS by sex, age group, and race and ethnicity based on all-inclusive truly population-based sources.
Materials and methods
Individual-level data from 2014 to 2018 on smoking status among microscopically-confirmed lung cancer cases from Florida’s cancer registry were combined with population denominators adjusted with NHIS data on smoking prevalence to compute population-based LCNS incidence rates and rate ratios. Incidence rates and proportional mortality were ranked against other cancers. Joinpoint regression analyses examined trends.



Proportions of LCNS ranged from 9% among White men to 83% among Chinese women. Overall, LCNS was 13% (IRR 1.13, 95%CI 1.08–1.17) more common among men than women, but variation occurred by age group, with female rates exceeding male in younger ages. Age-adjusted rates per 100,000 were highest among Asian/Pacific Islander (API) men and women (15.3 and 13.5, respectively) and Black populations (14.6, 12.9), intermediate for White (13.2, 11.8) and lowest among the Hispanic population (12.1, 10.6). Among API women, LCNS was the second leading cause of cancer death, surpassed only by breast cancer. LCNS trends were stable over time.


LCNS is the 11th most frequently occurring cancer in men and 8th in women. LCNS differences by race/ethnicity are small, within a 15% range of the White population’s rates. Surprisingly, API men and women have the highest LCNS rates and proportional mortality. As smoking prevalence decreases in the US, LCNS cases will inevitably increase, warranting inquiry into risk factors across the lifespan.

IARC classifies occupational exposure as a human carcinogen

Judith M Grrber, PhD, Associate Professor of Epidemiology, Department of Biostatistics & Epidemiology, Rutgers School of Public Health

Antoinette M Stroup, PhD. Professor of Epidemiology, Department of Biostatistics & Epidemiology, Rutgers School of Public Health; Director, New Jersey State Cancer Registry

Rutgers Cancer Institute of New Jersey

IARC classifies occupational exposure as a human carcinogen

In June of 2022, the International Agency for Research on Cancer (IARC) classified occupational exposure as a firefighter as carcinogenic to humans (Group 1[1]).[1] There are more than 15 million firefighters worldwide,[2] and approximately 1.1 million firefighters in the United States.[3] The IARC Working Group, which comprised of 25 scientists from 8 countries, made this determination based on sufficient epidemiological evidence for a causal association between occupation as a firefighter and both mesothelioma and bladder cancer.


The IARC Working Group also cited strong mechanistic evidence for the association.[1] This evidence found that firefighting shows the following key characteristics of carcinogens: the ability to induce epigenetic alterations, oxidative stress, chronic inflammation, genotoxicity, as well as to modulate receptor-mediated effects (specifically activation of the aryl hydrocarbon receptor that can increase cancer risk).[1]


The Working Group found limited evidence of a causal association for melanoma of the skin, non-Hodgkin lymphoma (NHL), as well as cancers of the colon, prostate, and testes.[1] “Limited evidence” in this context means that while there was a credible positive association, they could not rule out the influence of potential confounding by other factors such as other jobs or lifestyle factors; they could not eliminate the potential for bias, particularly that some cancers might be detected early through medical surveillance; and, that the current evidence was based on studies with inconsistent or statistically unstable findings.


The Working Group’s review included 52 cohort and case-control studies, 12 case reports, and 7 meta-analyses.[1] Many of these studies relied on linkages with population-based cancer registries to ascertain cancer incidence.[4-10]  For population-based cancer registries in the US and around the world, the IARC determination is an example of the important role of cancer registries and how data from cancer registries support research.


Importantly, these findings apply to all firefighters, including any type of career or volunteer who have prepared for and taken part in fire control activities. These findings reinforce the need to reduce cancer risk across the fire service.

Press Release



[1] IARC classifies compounds and agents with respect to their cancer risk using the following groupings: Group 1: Carcinogenic to humans; Group 2A: Probably carcinogenic to humans; Group 2B: Possibly carcinogenic to humans; Group 3: Not classifiable as to its carcinogenicity to humans.




1.            Demers, P.A., et al., Carcinogenicity of occupational exposure as a firefighter. Lancet Oncol, 2022. 23(8): p. 985-986.

2.            Brushlinsky, N., Ahrens, M., Sokolov, S., Wagner, I. G. World Fire Statistics.  [cited 2022 Sept. 14]; Available from:

3.            Fahy R., E., B., Stein, GP., US Fire Department Profile 2019. National Fire Protection Association (NFPA); Research., 2021.

4.            Marjerrison, N., et al., Comparison of cancer incidence and mortality in the Norwegian Fire Departments Cohort, 1960-2018. Occup Environ Med, 2022.

5.            Sritharan, J., et al., Cancer risk among firefighters and police in the Ontario workforce. Occup Environ Med, 2022. 79(8): p. 533-539.

6.            Daniels, R.D., et al., Mortality and cancer incidence in a pooled cohort of US firefighters from San Francisco, Chicago and Philadelphia (1950-2009). Occup Environ Med, 2014. 71(6): p. 388-97.

7.            Glass, D.C., et al., Mortality and cancer incidence among female Australian firefighters. Occup Environ Med, 2019. 76(4): p. 215-221.

8.            Glass, D.C., et al., Mortality and cancer incidence among male volunteer Australian firefighters. Occup Environ Med, 2017. 74(9): p. 628-638.

9.            Glass, D.C., et al., Mortality and cancer incidence in a cohort of male paid Australian firefighters. Occup Environ Med, 2016. 73(11): p. 761-771.

10.          Bigert, C., et al., Lung Cancer Among Firefighters: Smoking-Adjusted Risk Estimates in a Pooled Analysis of Case-Control Studies. J Occup Environ Med, 2016. 58(11): p. 1137-1143.

New Hampshire and Northeast U.S. Region’s High Childhood Cancer Rates Re-Examined

Judy Rees, BM, BCh, MPH, PhD

Director, NH State Cancer Registry; Associate Director for Community Outreach and Engagement, Dartmouth Cancer Center; Associate Professor, Department of Epidemiology

 Geisel School of Medicine at Dartmouth College


Background: In a 2018 descriptive study, cancer incidence in children (age 0-19) in diagnosis years 2003-2014 was reported as being highest in New Hampshire and in the Northeast region. (David A. Siegel, MD, MPH, of the Centers for Disease Control and Prevention (CDC).1

Methods: Using the Cancer in North America (CiNA) analytic file, we tested the hypotheses that incidence rates in the Northeast were higher than those in other regions of the United States either overall or by race/ethnicity group, and that rates in New Hampshire were higher than the Northeast region as a whole.

Results: In 2003-2014, pediatric cancer incidence was significantly higher in the Northeast than other regions of the United States overall and among non-Hispanic Whites and Blacks, but not among Hispanics and other racial minorities. However, there was no significant variability in incidence in the states within the Northeast overall or by race/ethnicity subgroup. Overall, statistically significantly higher incidence was seen in the Northeast for lymphomas (RR 1.15; 99% CI 1.10-1.19), central nervous system neoplasms (RR 1.12; 99% CI 1.07-1.16), and neuroblastoma (RR 1.13; 99% CI 1.05-1.21).

Conclusion: Pediatric cancer incidence is statistically significantly higher in the Northeast than in the rest of the United States, but within the Northeast, states have comparable incidence. Differences in cancer subtypes by ethnicity merit further investigation.

Impact: Our analyses clarify and extend previous reports by statistically confirming the hypothesis that the Northeast has the highest pediatric cancer rates in the country, by providing similar comparisons stratified by race/ethnicity, and by assessing variability within the Northeast.


Rees JR, Weiss JE, Riddle BL, Craver K, Zens MS, Celaya MO, Peacock JL. Pediatric Cancer by Race, Ethnicity and Region in the United States. Cancer Epidemiol Biomarkers Prev. 2022 Jul 21:EPI-22-0317. doi: 10.1158/1055-9965.EPI-22-0317. Epub ahead of print. PMID: 35861625.


We thank NAACCR for use of the analytical file and for the NAACCR Institutional Review Board approval of our study protocol.


1.  Siegel DA, Li J, Henley SJ, Wilson, RJ, Lunsford, NB, Tai, E, et al. Geographic Variation in Pediatric Cancer Incidence – United States, 2003-2014. MMWR Morb Mortal Wkly Rep 2018;67:707-13.




Press Release:

Cancer in African American Men- Action Plan

Henry Well

Executive Director

South Carolina Cancer Alliance


Cancer in African American Men- Action Plan

In 2021, the South Carolina Cancer Alliance and the South Carolina Institute of Medicine and Public Health released a data brief highlighting the burden of cancer on African American men in South Carolina. This publication was a follow-up to our 2019 Cancer in African American Men Report developed in partnership with the South Carolina Central Cancer Registry. This report utilized the Registry’s data to highlight the disparities facing African American men. Both reports are available at


The South Carolina Cancer Alliance utilized the data in these reports to request significant funding from the South Carolina General Assembly to implement interventions to increase cancer screening in African American men. We are happy to say our request to the General Assembly was approved in June 2022. This funding is the culmination of several years efforts to utilize the registry’s data to make data-driven decisions to make an impact on the lives of South Carolinians.

The Leading Cause of Death due to Brain Tumors in the United States

Blog Author: Quinn Ostrom
Blog Author’s Title: Co-Scientific PI (CBTRUS), Assistant Professor (Duke)
Central Brain Tumor Registry of the United States and Department of Neurosurgery, Duke University School of Medicine, Durham, NC

Glioblastoma is the most common malignant tumor of the brain and central nervous system (CNS), with approximately ~12,300 new cases diagnosed annually in the United States (US) between 2014 and 2018.1 Overall, it is the 3rd most common type of tumor reported in the brain and CNS, inclusive of both malignant and non-malignant tumors, and represents 14.3% of all tumors diagnosed in the brain and CNS.  Glioblastoma occurs more frequently in older adults, with median age of diagnosis of 65 years, and peak incidence among those 75-84 years old. There are significant demographic differences in populations diagnosed with glioblastoma: they are 60% more common in males than females, and nearly twice as common in white individuals as compared to black individuals.
Among the 186,632 deaths that occurred in individuals diagnosed with a primary brain tumor in the US from 2001 to 2017, 119,145 (~64%) occurred in those diagnosed with glioblastoma.1 Glioblastoma has among the worst outcomes for all cancer types in the US. Only 6.8% of people diagnosed with glioblastoma survived five years post diagnosis between 2001 and 2017.  Median overall survival for those diagnosed between 2001 and 2017 was 8 months, though this rises to 12-14 months in individuals who receive surgery and combination chemoradiation.  Survival is poorest in the elderly over 65 years old, where five-year survival is 2.7%.2 Survival is higher among females3, and is poorer in non-Hispanic whites than any other racial ethnic group.4

1.            Ostrom QT, Cioffi G, Waite K, Kruchko C, Barnholtz-Sloan JS. CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2014-2018. Neuro Oncol. 2021; 23(12 Suppl 2):iii1-iii105.
2.            Low JT, Ostrom QT, Cioffi G, et al. Primary brain and other central nervous system tumors in the United States (2014-2018): A summary of the CBTRUS statistical report for clinicians. Neurooncol. Pract. 2022; 9(3):165-182.
3.            Ostrom QT, Rubin JB, Lathia JD, Berens ME, Barnholtz-Sloan JS. Females have the survival advantage in glioblastoma. Neuro Oncol. 2018.
4.            Ostrom QT, Cote DJ, Ascha M, Kruchko C, Barnholtz-Sloan JS. Adult Glioma Incidence and Survival by Race or Ethnicity in the United States From 2000 to 2014. JAMA Oncol. 2018; 4(9):1254-1262.

For more information on glioblastoma and statistics for all primary brain and other CNS tumor please see:
CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2014–2018
Quinn T Ostrom, Gino Cioffi, Kristin Waite, Carol Kruchko, Jill S Barnholtz-Sloan
Neuro-Oncology, Volume 23, Issue Supplement_3, October 2021, Pages iii1–iii105,
Abstract:  The Central Brain Tumor Registry of the United States (CBTRUS), in collaboration with the Centers for Disease Control and Prevention (CDC) and National Cancer Institute (NCI), is the largest population-based cancer registry focused exclusively on primary brain and other central nervous system (CNS) tumors in the United States (US) and represents the entire US population. This report contains the most up-to-date population-based data on primary brain tumors available and supersedes all previous reports in terms of completeness and accuracy and is the first CBTRUS Report to provide the distribution of molecular markers for selected brain and CNS tumor histologies. All rates are age-adjusted using the 2000 US standard population and presented per 100,000 population. The average annual age-adjusted incidence rate (AAAIR) of all malignant and non-malignant brain and other CNS tumors was 24.25 (Malignant AAAIR=7.06, Non-malignant AAAIR=17.18). This overall rate was higher in females compared to males (26.95 versus 21.35) and non-Hispanics compared to Hispanics (24.68 versus 22.12). The most commonly occurring malignant brain and other CNS tumor was glioblastoma (14.3% of all tumors and 49.1% of malignant tumors), and the most common non-malignant tumor was meningioma (39.0% of all tumors and 54.5% of non-malignant tumors). Glioblastoma was more common in males, and meningioma was more common in females. In children and adolescents (age 0–19 years), the incidence rate of all primary brain and other CNS tumors was 6.21. An estimated 88,190 new cases of malignant and non-malignant brain and other CNS tumors are expected to be diagnosed in the US population in 2021 (25,690 malignant and 62,500 non-malignant). There were 83,029 deaths attributed to malignant brain and other CNS tumors between 2014 and 2018. This represents an average annual mortality rate of 4.43 per 100,000 and an average of 16,606 deaths per year. The five-year relative survival rate following diagnosis of a malignant brain and other CNS tumor was 35.6%, for a non-malignant brain and other CNS tumors the five-year relative survival rate was 91.8%.

Link to Article:

Population-Based Cancer Survival in Canada and the United States by Socioeconomic Status: Findings from the CONCORD-2 Study

Hannah K Weir
Senior Epidemiologist
Division of Cancer Prevention and Control
Centers for Disease Control and Prevention

NAACCR colleagues – I would like to share a paper from the Spring issue of the Journal of Registry Management pages 25 -35.

The study was a comparative analysis of cancer survival between Canada and the United States using data from the CONCORD-2 study. This was the largest such study and included survival data from 33 NPCR/SEER registries (covering 73% of the US population) and 10 Canadian provincial registries (covering more than 99% of the Canadian population).

I want to thank all NAACCR registries that participated in this study. This work demonstrates the value of comparative analyses.  Of critical importance is the fact that all NAACCR member registries collected and reported high-quality data using similar procedures and meeting robust quality standards.

Population-based cancer survival in Canada and the United States by socio-economic status: findings from the CONCORD-2 study. Hannah K. Weir, PhD; Heather Bryant, MD; Donna Turner, PhD; Michel P. Coleman, MP, MD; Angela B. Mariotto, PhD; Devon Spika, MSc; Melissa Matz, PhD; Rhea Harewood, MSc; Thomas C. Tucker, PhD; Claudia Allemani, PhD; on behalf of the Canada–US CONCORD Working Group

Abstract: Background: Population-based cancer survival provides insight into the effectiveness of health systems to care for all residents with cancer, including those in marginalized groups.
Methods: Using CONCORD-2 data, we estimated 5-year net survival among patients diagnosed 2004–2009 with one of 10 common cancers, and children diagnosed with acute lymphoblastic leukemia (ALL), by socioeconomic status (SES) quintile, age (0–14, 15–64, ≥65 years), and country (Canada or United States).
Results: In the lowest SES quintile, survival was higher among younger Canadian adults diagnosed with liver (23% vs 15%) and cervical (78% vs 68%) cancers and with leukemia (62% vs 56%), including children diagnosed with ALL (92% vs 86%); and higher among older Americans diagnosed with colon (62% vs 56%), female breast (87% vs 80%), and prostate (97% vs 85%) cancers. In the highest SES quintile, survival was higher among younger Americans diagnosed with stomach cancer (33% vs 27%) and younger Canadians diagnosed with liver cancer (31% vs 23%); and higher among older Americans diagnosed with stomach (27% vs 22%) and prostate (99% vs 92%) cancers.
Conclusions: Among younger Canadian cancer patients in the lowest SES group, greater access to health care may have resulted in higher cancer survival, while higher screening prevalence and access to health insurance (Medicare) among older Americans during the period of this study may have resulted in higher survival for some screen-detected cancers. Higher survival in the highest SES group for stomach and liver may relate to treatment differences. Survival differences by age and SES between Canada and the United States may help inform cancer control strategies.

Racial/Ethnic Disparities in HPV-Related Oropharyngeal Cancer Outcomes among Males in the United States: A National Cohort Study

Jeanne M. Ferrante, MD, MPH
Professor, Family Medicine and Community Health
Director, New Jersey Primary Care Research Network
Rutgers Robert Wood Johnson Medical School

Racial/Ethnic Disparities in HPV-Related Oropharyngeal Cancer Outcomes among Males in the United States: A National Cohort Study

·         Human papillomavirus (HPV)-associated oropharyngeal cancer among males has surpassed cervical cancer as the most prevalent HPV-associated cancer in the US, with the majority of cases diagnosed at late stage.
·         While incidence rates of HPV-associated oropharyngeal cancer have remained stable for racial/ethnic minority groups from 2005-2016, rates of late-stage cancer increased over 50% among non-Hispanic (NH) white males.
·         There were no differences in late-stage diagnosis between Hispanic or NH black males compared with NH white males.
·         Hispanic and NH black males had higher oropharyngeal cancer mortality that was not explained by stage at diagnosis and treatment modality.

Background: Little is known regarding differences in male human papillomavirus-related oropharyngeal cancer incidence and outcomes by race/ethnicity. We evaluated age-adjusted incidence trends, late-stage diagnosis, survival, and cancer-specific mortality among males diagnosed with human papillomavirus-related oropharyngeal cancer.

Methods: In this population-based retrospective cohort study, we identified males diagnosed with oropharyngeal cancer in the United States from 2005 to 2016 in the North American Association of Central Cancer Registries. Associations of race/ethnicity with late-stage diagnosis, cancer-specific survival, and mortality were compared using multivariable logistic and Cox proportional hazard analysis, respectively, adjusting for age, health insurance, county level attributes of residence and poverty, stage at diagnosis, and geographic region of the United States.

Results: The majority of the 162,183 human papillomavirus-related oropharyngeal cancers were in Non-Hispanic White males (84.2%), with 50% increase in late-stage cancer incidence among White males from 2005 to 2016. Despite having similar odds of late-stage diagnosis as White males, Hispanic and Non-Hispanic Black males had higher cancer-specific mortality (adjusted hazard ratios [aHR] 1.17; 95% CI 1.08, 1.26, and aHR 1.79; 95% CI 1.71, 1.88, respectively). Adjusting for treatment attenuated, but did not eliminate, the higher mortality in Hispanic and Black males.

Conclusions: Non-Hispanic White males are disproportionately affected by late-stage human papillomavirus-related oropharyngeal cancer, while Hispanic and Non-Hispanic Black males have higher cancer-specific mortality that was not explained by stage or treatment modality. Interventions to increase human papillomavirus vaccine uptake, early detection, and treatment of oropharyngeal cancer in males are needed to decrease disparities in incidence and mortality.

Lay Summary: Oropharyngeal cancer in males is the most common cancer associated with human papillomavirus (HPV) in the US. Racial/ethnic groups are affected differently, with White males accounting for the largest increases in newly diagnosed oropharyngeal cancers each year. Although Hispanic and Black males were not more likely to have late-stage diagnosis, they had higher death rates from oropharyngeal cancers associated with HPV. Public health campaigns are needed to increase awareness of HPV, its link to oropharyngeal cancer, and to promote uptake of HPV vaccinations in adolescent and young adult males.

Cancer Mortality in Latino Populations by Birthplace and Generation: A Complex Analysis

Paulo S Pinheiro, MD MSc PhD
Research Associate Professor
University of Miami Miller School of Medicine
Sylvester Comprehensive Cancer Center

In a recent editorial in the Journal of National Cancer Institute, Associate Professor Paulo Pinheiro at the University of Miami comments on the most recent manuscript in Cancer in Latinos in the Multi-Ethnic Cohort (MEC) by Professor Wendy Setiawan of The University of Southern California. His editorial underscores the importance of the role of population-based, cancer registry data in cancer research and cancer health disparity research.

Two highlights according to him: first, as results from the MEC show, cohort studies are not always representative of race-ethnicity on a population basis. In other words, there is no replacement for cancer registry data, the only truly population-based source of data to characterize race-ethnicity in the US; second, there is no approximation of cancer mortality rates to those of non-Hispanic Whites with increasing generation of US-born Mexicans, which somewhat contradicts prevailing theories of acculturation and cancer. In this context registry data hold unique opportunities for linkages that will accurately characterizes racial-ethnic groups in the US.

Symptomatic presentation of cervical cancer in emergency departments in California

Fran Maguire, PhD, MPH
Research Data Analyst, California Cancer Reporting and Epidemiologic Surveillance (CalCARES) Program
UC Davis Comprehensive Cancer Center/UC Davis Health



  • Despite effective screening tools and vaccines against the causative agent (HPV), nearly a third of women with cervical cancer in California presented symptomatically in emergency departments (ED) from 2006 to 2017.
  • Women presenting in the ED were more likely to have public or no insurance and low socioeconomic status.
  • These women were 3 to 5 times more likely to have stage III or IV disease and had worse survival.
  • This suggests that many women, especially those with low socioeconomic status, are likely not benefiting from screening and have poor access to healthcare.

Full Article

Purpose: Through screening and HPV vaccination, cervical cancer can mostly be prevented or detected very early, before symptoms develop. However, cervical cancer persists, and many women are diagnosed at advanced stages. Little is known about the degree to which U.S. women may begin their diagnostic workup for cervical cancer in Emergency Departments (ED). We sought to quantify the proportion of women presenting symptomatically in the ED prior to their diagnosis with cervical cancer and to describe their characteristics and outcomes.
Methods: We identified women diagnosed from 2006 to 2017 with cervical cancer in the California Cancer Registry. We linked this cohort to statewide ED discharge records to determine ED use and symptoms present at the encounter. Multivariable logistic regression models examined associations with ED use and multivariable Cox proportional hazards regression models examined associations with survival.
Results: Of the more than 16,000 women with cervical cancer in the study cohort, 28% presented symptomatically in the ED prior to diagnosis. Those presenting symptomatically were more likely to have public (odds ratio [OR] 1.16; 95% confidence interval [CI] 1.06-1.27) or no insurance (OR 4.81; CI 4.06-5.71) (vs. private), low socioeconomic status (SES) (OR 1.76; CI 1.52-2.04), late-stage disease (OR 5.29; CI 4.70-5.96), and had a 37% increased risk of death (CI 1.28-1.46).
Conclusion: Nearly a third of women with cervical cancer presented symptomatically, outside of a primary care setting, suggesting that many women, especially those with low SES, may not be benefiting from screening or healthcare following abnormal results.

Full Article

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