North American Association Of Central Cancer Registries Research Articles

Trends in the Utilization and Outcomes of Brachytherapy vs. Proton Therapy in Localized Uveal Melanoma in the United States

To determine the trends in the utilization of different techniques of radiation treatment in localized uveal melanoma in the United States and to determine the difference in outcome between brachytherapy (BT) and proton-beam therapy (PT). Using the North American Association of Central Cancer Registries (NAACCR), we identified 17451 patients with localized uveal melanoma with known both surgical and method of radiation therapy between 1995-2018. Univariate and multivariable analyses were performed to identify factors and characteristics that may have a potential impact on the treatment. Net survival was calculated using Relative survival in Ederer II cumulative expected method with actuarial. Overall survival (OS) and cancer-specific survival (CSS) were estimated by Kaplan-Meier method and life-tables. The registries included 28.312 patients with uveal melanoma, out of them 22,983 patients with localized disease. Patients with known both surgical and method of radiation therapy were 17451 patients. We have studied this group further. The median age of this group was 61 (IQR 51-71), males were 51.9% (N = 9063), whites were 98.1% (N = 16921), and choroidal tumors were 87.8% (N = 15330). The median tumor thickness was 3.9mm (IQR 24-70), while, the median maximum tumor diameter was 11.3mm (IQR 8.0-14.4). The median follow-up time was 5.9 years (IQR 3.1-10.3). Among all patients, 57.5% (n = 10032) received BT, and 9.8% (n = 1708) received PT. Collectively, 30.1% (n = 5247) of the patients received no radiation treatment. BT constituted 14% of treatment modalities in 1995 and steadily increased to 65% in 2017. PT utilization was minimal in 1995 (1.4%) and also increased to 14.3% in 2017. Younger age and thinner tumor thickness were independently associated with better Cancer-specific survival (CSS) and overall survival (OS). For all patients who were treated primarily with radiation treatment, the 5-year OS was 85,9% and the 10-year OS was 77.2%. There were no differences in rates of OS or CSS between patients who were treated with BT or PT. There is a continuous increase in the utilization of both BT and PT in the treatment of localized uveal melanoma. Similar survival outcomes could be anticipated for both radiation treatment techniques.

Abstract A021: Cancer disparities among Muslim women: Population identification by name

Abstract Background: A total of 3.5 million American Muslims live in the United States (US), representing 1% of the total population. Over 50% of American Muslims are foreign-born [1]. Racially, American Muslims are very diverse religious groups in the US with no majority race, split as 25% Black, 24% White, 18% Arab, 18% Asian, 7% mixed race, and 5% Hispanic [2]. In terms of origin, Middle Eastern Countries represent 41% of the entire Muslim community in the US [3]. In the last two decades, the population growth trajectory of the American Muslim community has been doubling; the projection was 2.6 million (0.8 %) in 2010 and is expected to be 6.2 million (1.7%) in 2030 [4]. Virginia has the second-largest Muslim population in the US by the percentage of the population, with an estimated 2.7% [2]. Much of that population is concentrated in Northern Virginia and the Richmond Area [5]. Our previous work showed that Muslim women seek cancer care at an advanced stage. However, we had a limitation in identifying Muslim women in the VCU health system as most Muslims do not share their religion at registration [6]. We created an algorithm to identify Muslim patients by name to address this issue. Methods: Identifying patient populations by name has been done by the North American Association of Central Cancer Registries (NAACCR) to better identify Hispanic populations. Their algorithm uses family names and county of residence information [7]. Our algorithm uses Names only at this time. We used a collection of Middle-Eastern names from a publicly available database [8]. We excluded names frequently used in the United States; examples include Maria, Sarah, and Daniel. Then we used the Names in the database to heuristically identify patients with Middle-Eastern origin. Results: We identified 165 female Muslim cancer patients between 2012 and 2021 at VCU Health System, a 260% improvement compared to our previous work without the new identification algorithm. Similar to our previous work, the extended cohort shows that Muslim women are diagnosed with late-stage breast cancer more frequently than non-Muslim women (20% vs. 14%, p-value = 0.04). Conclusion: Our algorithm to identify Muslim patients made a difference in the patient cohort size, making it possible to do a more robust analysis and draw statistically significant conclusions. Future work: Our algorithm needs further improvement. Currently, we are focusing on Middle-Eastern names, we plan to be more inclusive with additional Muslim majority areas. Citation Format: Tamas S. Gal, NourEldin Abosamak, Fariha Tariq, Nevena Skoro, Rana Ramadan, Asmaa Namoos. Cancer disparities among Muslim women: Population identification by name [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr A021.

Abstract C119: Rising incidence and racial disparities of early-onset endometrial cancer in the United States, 1995-2018

Abstract BACKGROUND: Endometrial cancer (EC) is the most common gynecologic cancer and the fourth most common cancer among women in the United States (US). Although early-onset endometrial cancer (EOEC, diagnosed under age 50) is relatively uncommon, several studies have reported the incidence of EOEC has been increasing in recent decades. Because few studies have examined differences in incidence trends across race/ethnicity between EOEC and late-onset endometrial cancer (LOEC, diagnosed at age 50 or older), we compared the incidence trends between EOEC and LOEC in the US by race/ethnicity across two decades. METHODS: We used the CiNA Analytic File, 1995-2018, Public Use, obtained from the North American Association of Central Cancer Registries (NAACCR) and identified 930,176 invasive endometrial cancer cases (ICD-O-3 site code C54.1, excluding histology codes 9050-9055, 9140, and 9590-9992), of which 12.6% were EOEC and 87.4% LOEC. We examined the characteristics of these cases including race/ethnicity, year of diagnosis, tumor stage and grade by EOEC and LOEC status. We calculated the yearly race/ethnicity-specific age-adjusted incidence rates (AAIR) and the average annual percent change (AAPC) in the AAIRs for EOEC and LOEC respectively. RESULTS: Compared with LOEC cases, women with EOEC were less likely to be non-Hispanic (NH) White, more likely to be Hispanic or NH Asian/Pacific Islander (API), and less likely to have advanced stage or poorly differentiated grade. The AAIRs were highest in NH Whites in 1995 for both EOEC and LOEC. By 2018, the highest AAIR was found in Hispanics for EOEC and in NH Blacks for LOEC, resulting from faster increases in EC risk among the non-white groups. AAIRs for EOEC and LOEC increased over the study period, with the overall AAPC being three times as high for EOEC as LOEC (AAPC 1.72 vs. 0.57). For EOEC, the largest increases were observed in NH Blacks (AAPC=3.52) followed by Hispanics (AAPC=2.77) and NH API (AAPC=2.06). For LOEC, the largest increases were observed in NH APIs (AAPC=2.42) followed by NH Blacks (AAPC=2.28) and Hispanics (AAPC=1.71). For both EOEC and LOEC, the AAPCs were highest in NH Blacks and lowest in NH Whites. CONCLUSIONS: The faster increases in EOEC incidence among NH Black, Hispanic, and NH API women likely reflect racial/ethnic differences in the prevalence and trends of endometrial cancer risk factors. This indicates that these higher-risk populations might benefit from targeted surveillance and interventions. Future studies should evaluate whether these differences across race/ethnicity are attributable to specific tumor characteristics, biomarkers, or other sociodemographic factors. Citation Format: Talar S. Habeshian, Lihua Liu, Juan-Juan Zhang, Margaret Du, Immaculata De Vivo, Veronica W. Setiawan. Rising incidence and racial disparities of early-onset endometrial cancer in the United States, 1995-2018 [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr C119.

Geographical Barriers to Accessing Specialty Cancer Care Among Adolescents and Young Adults with Acute Lymphoblastic Leukemia

Background Prior studies demonstrated that a minority of adolescents and young adults (AYA, age 15-39 years) with acute lymphoblastic leukemia (ALL) receive care at specialty cancer centers (SCC), defined as National Cancer Institute Designated Cancer Centers (NCIDCC) and/or Children's Oncology Group (COG) sites. Receipt of front-line ALL treatment at an SCC appears particularly important, as a significant survival benefit has been observed for AYA ALL patients treated at these sites. In this population-based analysis, we describe the geographical distribution of U.S. AYA ALL patients relative to SCCs and identify patients at risk of severe geographical barriers to SCC-level care. Although an association between NCI Community Oncology Research Program (NCORP) sites and AYA ALL outcomes have not, to our knowledge, been assessed, we also evaluated NCORP sites, as the NCORP program may offer an opportunity for clinical trial participation. Methods We used data obtained from the North American Association of Central Cancer Registries (NAACCR) to identify the county at diagnosis of AYA ALL patients diagnosed between 2004-2016 across 43 U.S. states; 7 states did not release data (light gray in Figures). Addresses of NCIDCC, COG and NCORP sites were obtained from publicly available websites. Driving distance and travel time from counties where participants lived to the closest NCI, COG and NCORP sites were calculated for each individual. For Hawaii and Alaska only, straight line distances were calculated because distances between patients and facilities are separated by water, separated by another country or the counties are so large that counties centroids had to be moved long distances to attach to the road network. Geographic access to an SCC or NCORP site was mapped by county. Based on a combination of driving distance and the number of patients diagnosed within a county during our study period, we grouped each county as having excellent, mild, moderate or severe access issues (see Figure for definitions). Results Among 11,813 AYA ALL patients, 43% were 25-39 years old, 66% were male, 33% were Hispanic, and 37% had public insurance. More patients lived in the West (30%), followed by the Northeast (22%), Southwest (17%), Midwest (16%), and Southeast (15%). A total of 1,537 U.S. counties were found to have at least one newly diagnosed AYA ALL patient; the largest patient population was present in Los Angeles County, CA (n=749). The distribution of U.S. AYA ALL patients relative to NCIDCC (Fig 1A), COG (Fig 1B), and NCORP centers (not shown) demonstrates that moderate/severe issues in geographical access to NCIDCC affects 43% of AYA ALL patients, relative to COG (19%) and NCORP (28%). Strikingly, 31%, 21% and 13% of patients would need to drive ≥ 1.5 hours one way to access the nearest NCIDCC, NCORP or COG center, respectively. In contrast, 43% of AYA ALL patients experience excellent geographical access to an NCIDCC, while 61% and 58% have excellent access to a COG or NCORP site, respectively. Conclusions Although AYA ALL patients have experienced superior survival following treatment at an SCC, substantial geographical barriers exist to accessing this care across the U.S., particularly at NCIDCC. Broader geographical access to COG sites suggests some younger AYAs may benefit from consideration of referral to these pediatric centers. While NCORP centers appear more geographically accessible than NCIDCC, work is needed in order to understand whether these sites consistently provide comprehensive ALL care and clinical trial options across the U.S. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

PSAT241 Variation in the Diagnosis of Noninvasive Follicular Thyroid Neoplasm With Papillary-Like Nuclear Features (NIFTP) in the United States

Abstract Background The North American Association of Central Cancer Registries (NAACCR) develops and promotes uniform data standards for cancer registries, such as uniform cancer coding, and is used by all central cancer registries in the United States (US) and Canada, including Surveillance, Epidemiology and End Results (SEER). Effective January 1, 2017, the NAACCR modified its coding scheme and noninvasive encapsulated follicular variant of papillary thyroid cancer (EFVPTC) was reclassified as non-invasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP) to reflect the indolent nature and very low risk of adverse outcomes of this thyroid tumor. The diagnostic use of NIFTP was anticipated to impact tens of thousands of patients in the US. Since NIFTP is no longer considered a cancer, as of January 1, 2021, it was no longer a reportable diagnosis in SEER. However, little is known about how the diagnosis of NIFTP was utilized across different regions and patient populations in the US when it was a reportable diagnosis. Methods Data was extracted from the US SEER-21 cancer registry (2000-2018). The study cohort comprised of individuals diagnosed with papillary or follicular thyroid cancer (2000-2018), or NIFTP (2017-2018). We examined the annual incidence of thyroid cancer by subtypes and NIFTP. Using data for 2018, we determined the rates of NIFTP for each of the 16 sites included in SEER-21. In addition, we compared the demographics of patients diagnosed with NIFTP to that of patients diagnosed with papillary and follicular thyroid cancer using Chi-square test. Results Between 2010 and 2018, we identified a total of 191,107 cases (182,893 PTC, 7,445 FTC, and 769 NIFTP). Incidence of FVPTC sharply declined from 2015 to 2018, with observed increases in NIFTP and encapsulated PTC/ invasive EFVPTC each accounting for 17% and 10% of the decline in FVPTC, respectively. High heterogeneity was observed in the regional incidence of NIFTP in 2018, with incidence rates ranging from 0.0% (Alaska) to 5.8% (Seattle-Puget Sound). Based on 2018 data, a diagnosis of NIFTP (2.2% of total thyroid cancer cases) was significantly associated with female sex (P=0.001), Black race (P<0.001), and non-Hispanic ethnicity (P<0.001) compared to diagnosis of papillary and follicular thyroid cancer. Conclusion There is marked variation in the use of the NIFTP diagnoses. The recent NAACCR coding change that resulted in NIFTP, a tumor with uncertain malignant potential and for which there is no long-term outcome data available, no longer being a reportable diagnosis will disproportionately affect women and Black patients, and patients who reside in regions with higher rates of NIFTP diagnoses. Presentation: Saturday, June 11, 2022 1:00 p.m. - 3:00 p.m.

Demographic disparities in genomic data and clinical trials for multiple myeloma.

8043 Background: There are considerable outcome disparities among patients with multiple myeloma (MM). African-Americans have higher risk of developing MM, earlier age at diagnosis, and higher mortality compared to Whites. While outcomes have multifactorial socioeconomic etiologies, race and ethnicity (R&E) correlate with genomic ancestry, and any role of genetics should be explored. This requires equitable representation in biological databases like The Cancer Genome Atlas (TCGA). Here, we characterize disparities in MM cases of TCGA and clinical trials (CT). Methods: MM incidence was obtained from North American Association of Central Cancer Registries (NAACCR) for R&E, sex and age ( < 50, 50-64, 65+ years). Race includes White, Black, and Asian, along with Hispanic ethnicity, as TCGA MM is limited to these groups. Genes with oncogenic potential and > 5% mutation were stratified by R&E and age. TCGA MM cases are from USA, Canada, Italy, and Spain. On ClinicalTrials.gov, completed MM CT limited to these countries were identified. Student’s t-test and chi-square test were used to analyze disparities and gene mutations. Kaplan-Meier curve was generated to evaluate survival. Results: TCGA MM representation is in Table, calculated as (demographic TCGA cases divided by total TCGA cases) divided by (demographic incidence divided by total incidence). Race was not reported in 20% of TCGA, 4% of CT, and 3% of NAACCR. Of cases reporting R&E, Hispanics are underrepresented by 26% in TCGA and 47% in CT relative to incidence, Blacks by 22% in TCGA and 41% in CT, and Asians by 40% in TCGA and 10% in CT. Whites are overrepresented, by 8% in TCGA and 7% in CT. More men are in TCGA than women, in all R&E. Less than 25% of patients age < 50 relative to incidence are in TCGA, in all R&E. BCL7A is mutated more in Blacks age < 50 (n = 20, 50%) than Whites (n = 39, 10%) (p < 0.01). FAT4 is mutated in Whites age 65+ (n = 31, 10%) but not Blacks. In all ages, KRAS is mutated more in Blacks than Whites (31-35% vs. 20-25%, p < 0.05). Black patients have lower survival than Whites (p < 0.02). In patients age 65+, KRAS mutation is associated with 10% lower 4.5-year survival. Conclusions: Substantial disparities in Black, Hispanic, women, and age representation exist for MM cases in TCGA and CT. This stratification by R&E and age offers new insight on BCL7A, FAT4, and KRAS mutation in MM. Mutation status is associated with survival in older patients. Equitable demographic representation should be pursued to improve quality of available data and access to medical resources for all populations. [Table: see text]

Abstract LB085: Examining converging breast cancer incidence rates by race/ethnicity, poverty, and geography

Abstract Background: Non-Hispanic Black (NHB) women have had historically lower rates of postmenopausal breast cancer compared to non-Hispanic White (NHW) women in the United States (US). However, since 1999, there has been a decline of breast cancer rates among NHW and a rise among NHB women, leading to a potential convergence. It is unclear whether these trends by race/ethnicity are driven by a certain subgroup, so we estimated trends in breast cancer incidence by race/ethnicity within subgroups of stage, poverty, and geographic factors. Methods: We limited our study population to women aged 50-79 years. We used data from 1999-2016 from the North American Association of Central Cancer Registries (NAACCR), which covers over 90% of the US population. We estimated longitudinal trends in breast cancer incidence by a combination of race/ethnicity (NHB, NHW, Hispanic) and the following variables: stage (local, regional, distant), county-level percent persons living below the federal poverty line (FPL) (<5%, 5-9.99%, 10-20%, >20%), county-level urban/rural status, and US Census geographic region (Northeast, Midwest, South, West). We estimated the average annual percent change (AAPC) in breast cancer incidence rates using the National Cancer Institute JoinPoint Regression Program 4.7.0.0. We report only statistically significant AAPCs, assuming non-significant trends indicate a stable incidence rate over the given time period. Results: From 1999-2016, the breast cancer incidence rate increased on average by 0.5% per year for NHB women and was non-significant/stable for NHW and Hispanic women. Among NHB women, the AAPC was 1.2% for local stage and 1.3% for distant stage. In contrast, the AAPC was -1.3% and -0.7% for regional stage among NHW and Hispanic women, respectively. By county-poverty level, there was a 0.8% AAPC among NHB women living in a county with 5-9.99% living below the FPL. The AAPCs among NHW women living in counties with 5-9.99%, 10-19.99%, and >20% below the FPL were -0.7%, -0.6%, and -0.7%, respectively. Among rural counties, the AAPC was 1.2% among NHB women and -0.5% among NHW women. Lastly, the AAPC was 0.7% and 1.0% among NHB women living in the South and Northeast, respectively. The AAPC was 0.6% among Hispanic women and -0.4% among NHW women living in the Northeast. Conclusion: In contrast to NHW and Hispanic women, the incidence rate of breast cancer is rising among several subgroups of NHB women, including women in the Northeast, South, rural counties, and counties with less poverty. The increasing incidence among NHB women for both local and distant stage breast cancers suggests the trend may not be due to increases in screening alone. There is an increasing burden of breast cancer among these subgroups, which may exacerbate existing disparities and warrants further investigation and targeting for breast cancer prevention. Citation Format: Maneet Kaur, Corinne E. Joshu, Kate E. Dibble, Junrui Lyu, Avonne E. Connor. Examining converging breast cancer incidence rates by race/ethnicity, poverty, and geography [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr LB085.

Web-based interactive mapping from data dictionaries to ontologies, with an application to cancer registry

BackgroundThe Kentucky Cancer Registry (KCR) is a central cancer registry for the state of Kentucky that receives data about incident cancer cases from all healthcare facilities in the state within 6 months of diagnosis. Similar to all other U.S. and Canadian cancer registries, KCR uses a data dictionary provided by the North American Association of Central Cancer Registries (NAACCR) for standardized data entry. The NAACCR data dictionary is not an ontological system. Mapping between the NAACCR data dictionary and the National Cancer Institute (NCI) Thesaurus (NCIt) will facilitate the enrichment, dissemination and utilization of cancer registry data. We introduce a web-based system, called Interactive Mapping Interface (IMI), for creating mappings from data dictionaries to ontologies, in particular from NAACCR to NCIt.MethodIMI has been designed as a general approach with three components: (1) ontology library; (2) mapping interface; and (3) recommendation engine. The ontology library provides a list of ontologies as targets for building mappings. The mapping interface consists of six modules: project management, mapping dashboard, access control, logs and comments, hierarchical visualization, and result review and export. The built-in recommendation engine automatically identifies a list of candidate concepts to facilitate the mapping process.ResultsWe report the architecture design and interface features of IMI. To validate our approach, we implemented an IMI prototype and pilot-tested features using the IMI interface to map a sample set of NAACCR data elements to NCIt concepts. 47 out of 301 NAACCR data elements have been mapped to NCIt concepts. Five branches of hierarchical tree have been identified from these mapped concepts for visual inspection.ConclusionsIMI provides an interactive, web-based interface for building mappings from data dictionaries to ontologies. Although our pilot-testing scope is limited, our results demonstrate feasibility using IMI for semantic enrichment of cancer registry data by mapping NAACCR data elements to NCIt concepts.

Changes in the proportion of squamous cell carcinoma in head and neck cancer in the United States and Canada, 1995-2015.

e17554 Background: There has been a shift in the epidemiologic landscape of head and neck cancer (HNC) with decreasing incidence of tobacco-related and increasing incidence of human papillomavirus (HPV)-related HNC. While it is often reported that ≥ 90% of HNC is considered squamous cell carcinoma (SCC), there is an apparent lack of recent population-based data to support this claim. This study aimed to estimate the current proportion and evaluate change in the proportion of SCC in HNC diagnoses in North America (United States and Canada) from 1995 to 2015. Methods: We queried the North American Association of Central Cancer Registries (NAACCR) database for HNC cases that were of either squamous (SQ) (ICD-0-3: 8050-8089) or squamous plus unspecified epithelial (SQE) (ICD-0-3:8010-8089) origin in the United States and Canada ( n = 1,054,409). All HNC included in the analysis were microscopically confirmed, malignant head and neck primary tumor sites of the oral cavity, nasopharynx, hypopharynx, oropharynx, nasal cavity, and larynx. Sub-analyses were conducted across more extensive cohort restriction combinations (country specific, registry specific, and primary sequence of cancer). Results: The overall proportion of SCC in HNC in North America from 1995-2015 was 81.7% (95% CI: 81.7 – 81.8) for SQ and 84.9% (95% CI: 84.8 – 85.0) for SQE. The proportion of SCC in HNC peaked in 2015 with 83.3% (95% CI: 83.0 – 83.6) for SQ and 85.9% (95% CI: 85.6 – 86.2) for SQE; and was lowest in 2005 with 80.7% (95% CI: 80.4 – 81.1) for SQ and 84.3% (95% CI: 83.9 – 84.6) for SQE. In the time period of this study (1995 – 2015), there were no years for which SQ or SQE made up 90% or more of HNC for any of the HNC cohorts. Conclusions: The changing landscape of HNC risk factors in the United States and Canada warrants re-evaluation and update of HNC epidemiological literature with regards to the proportion of SCC in HNC.

Acute Lymphocytic Leukemia in the Latin American Population

Introduction: An interesting epidemiological aspect of ALL is the variation between ethnic groups. Among all subtypes of leukemia Latinos have lower incidence rates. However, in remarkable contrast, ALL has a higher incidence rate in the Latino population and also carries a more dismal prognosis (Barrington-Trimis J, et al Blood 2015).The majority of reported data among Latinos either exclusively looks at B cell precursor (BCP) ALL or does not distinguish between subtypes. In this study we used the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database to delineate the differences in incidence rates of B-ALL and T-ALL across ethnic groups in the United States.Epidemiologically, highest rates of ALL worldwide have been reported in both adult and pediatric Latino patients. However, determining who is to be considered Latino is not always straightforward. Many studies utilize self reported ethnicity and databases such as the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) employ complex algorithms to determine ethnicity. Of note, the North American Association of Central Cancer Registries (NAACCR) Hispanic Identification Algorithm (NHIA) used by SEER includes European Spaniards but excludes South American Brazilians. This is a point of special interest due to the fact that although the overall incidence of ALL in the Brazilian population is low, the regional distribution is strikingly heterogeneous, with higher rates in regions with higher indigenous ancestry.Methods: Data from the SEER-18 database was used compare incidence rates of T-ALL and B-ALL. Patients in which ethnicity was reported were included. Due to the utilization of cytogenetics and subsequent changes in ICD coding over the years we chose to look at the most recent data reported in 2014. We compared rates in non-Hispanic Whites, Latinos (Hispanic), Blacks and Asian-Pacific Islanders (API). Age-adjusted incidence rates per 100,000 person-years were calculated.Results: AAIR of B-ALL in the Hispanic population is consistently higher than that of Non-Hispanic Whites throughout the years, ranging from 1.0-2.4 per 100,000. Blacks had the lowest incidence overall, with rates approximately one third of those found in Latinos.The distribution of ALL throughout the Americas can perhaps shed some epidemiological light on the genetic origins of ALL in Latinos. The ancestry across Latin America is mixed but historical idiosyncrasies can perhaps explain the distribution of ALL in the Americas. We reviewed the available literature and found that throughout the Americas, higher incidence rates are seen in areas of higher Native American ancestry (Fig 1).Discussion:Our finding shows that the increase of ALL among Latinos is accounted for by the high rate of B cell origin. The increased incidence of ALL in the Latino population has been linked to polymorphisms in genes such as the transcription factor GATA3 (Perez-Andreu V, Nat Genet 2013). The underlying mechanism of disease has yet to be elucidated and is likely related to BCP- ALL and, more specifically, Ph-Like ALL. This variation appears to be related to Native American ancestry. Understanding the molecular mechanism and epidemiological origins of this subset of patients with aggressive features will lead to improved treatment and overall survival in this minority healthcare disparity. DisclosuresDouer:Shire: Membership on an entity's Board of Directors or advisory committees; Gilled Sciences, Inc: Consultancy; Spectrum: Consultancy; Jazz Pharmaceuticals: Consultancy; Amgen: Membership on an entity's Board of Directors or advisory committees; Pfizer: Honoraria.

Utility and Generalizability of Multistate, Population-Based Cancer Registry Data for Rural Cancer Surveillance Research in the United States.

More than 46 million Americans live in rural areas, but rural populations remain relatively understudied in cancer disparities research. However, several analyses of multistate cancer registry data that describe the rural cancer incidence burden have been recently published. In light of this, our article aims to characterize the utility and generalizability of multistate, population-based cancer registry datasets for rural cancer surveillance research. First, we describe the accessibility, geographic coverage, available variables, and strengths and weaknesses of five data sources. Second, we evaluate two of these data sources-the North American Association of Central Cancer Registries (NAACCR) public use dataset (93% population coverage) and the Surveillance Epidemiology and End Results (SEER) 18 dataset (28% population coverage)-on their characterization of rural-urban cancer incidence rates and sociodemographic representation. The five data sources varied in geographic coverage and extent of available variables. SEER 18's cancer rates sociodemographic representation differed from the more geographically representative NAACCR data. We suggest that SEER increase its geographic coverage to improve their generalizability and to take advantage of their utility to assess disparities along the cancer control continuum. We also suggest that non-SEER data sources be utilized more frequently to capitalize on their extensive geographic coverage. Cancer Epidemiol Biomarkers Prev; 27(11); 1252-60. ©2018 AACR.

Radiomics Prediction of Radiation Treatment Outcomes in Oropharyngeal Cancer: A Clinical and Image Repository in Concert with the Cancer Imaging Archive (TCIA)

There is an unmet need for integrating quantitative imaging biomarkers into current risk stratification tools. To explore the correlation between radiomics features – alone or in combination with clinical prognosticators- and tumor outcome, we retrieved clinical meta-data and matched baseline contrast-enhanced computed tomography (CECT) scans from a single institution, institutional review board-approved cohort of 495 oropharyngeal cancer (OPC) patients. We opted to publicly share this large curated data set and subsequent radiomics analytical outcome via The Cancer Imaging Archive (TCIA) to serve as a resource for optimized standardization in the radiomics field. Diagnostic CECT images were acquired at our institution between 2005 and 2012 for 495 OPC patients (prior to any active intervention) in Digital Imaging and Communications in Medicine (DICOM) format . Expert radiation oncologists manually segmented primary and nodal disease gross volumes (GTVp & GTVn). Structure sets were named per the American Association of Physicists in Medicine (AAPM) TG-263 recommendations, then retrieved in DICOM RTSTRUCT format. Matched patient, disease, treatment and outcomes data were obtained. Radiomics analysis was performed using an open-source institutionally-developed software that runs on a computer algorithm. Protected health information (PHI) was removed from all DICOM elements in compliance with the DICOM standards committee P.S. 3.15 Annex E, Attribute Confidentiality Profile using the Radiological Society of North America clinical trial processor (RSNA CTP). TCIA’s curation process ensures the DICOM data is free of PHI and all linkages between CT and structure sets are correct. Following curation the data was archived in TCIA as a permanent open-access collection named “HNSCC”. Anonymized data for 495 OPC patients will be made publicly available from TCIA as downloadable DICOM files (N=**), clinical data, and processed outputs, i.e. tumor segmentations and extracted radiomics features. All data attributes can be cross-referenced via the same anonymized subject IDs. We prepared a data dictionary that specifies clinical data attributes, definitions and possible variables per North American Association of Central Cancer Registries (NAACCR) guidelines. Large-scale data curation-anonymization-transfer workflows, as well as advanced image registration algorithms and common ontology data dictionaries, are unmet needs for joint machine-learning/radiomics research projects. If these resources are paired with large, curated data sets, like those provided via open-access mega-data repositories, like TCIA, the potential benefits include identification of imaging-derived radiomics signatures associated with treatment outcomes and normal-tissue complications across various head and neck epidemiologic cohorts.

Later Stage Disease and Earlier Onset of Rectal Cancer: Epidemiology and Outcomes Comparison of Rectal Cancer in a Rural Appalachian Area to State and National Rates

Although the overall rate of colorectal cancer (CRC) has remained stable, studies have shown an increase in the rate of CRC in young patients (<50) nationwide. We hypothesize that the rectal cancer (RC) rate in young people has increased in rural Appalachia. The goal is to provide insight into the future of RC epidemiology in underserved populations. This Institutional Review Board-approved retrospective study evaluated RC patients diagnosed in 2003 to 2016, and compared the ratio of early-onset RC to the state and national ratios using West Virginia State Cancer Registry, North American Association of Central Cancer Registries (NAACCR) and Surveillance, Epidemiology, and End Results Program Database. Demographics include age, gender, ethnicity, and county. We also evaluated cancer stage, family history, and comorbidities, including body mass index, smoking, and alcohol history. The rate of early-onset RC in our area is 1.5 times higher than the national rates. In our population, 100 per cent of patients were white with an equal gender distribution. Young patients with RC were noted to be more overweight than national rates. Young RC patients are more likely to have a first- or second-degree relative with cancer diagnosis. Smoking was strongly associated with young RC. Compared with national statistics, a higher proportion of young patients had Stage 1 or 2 disease which correlated with better survival. The rate of early-onset RC in the Tristate Appalachian area in West Virginia is higher than the national rate with risk factors including white ethnicity, obesity, diabetes mellitus, smoking, family history, and history of pelvic surgeries. It warrants further investigation and discussion of current CRC screening guidelines that begin at age 50.

Development of a tool for comprehensive evaluation of population-based cancer registries

ObjectiveSeveral methods have been suggested for evaluation of population-based cancer registries (PBCR) worldwide. However, most of these methods evaluate the data and outputs of the cancer registries. This study aimed to develop a comprehensive tool and protocol for evaluation of inputs, processes and outputs of a PBCR. MethodsThe standards of the North American Association of Central Cancer Registries (NAACCR) were used to draft a comprehensive checklist. In addition, the national guidelines of PBCR were used to develop a questionnaire for evaluation of knowledge and practice of the PBCR personnel. Furthermore, a protocol for evaluation of the completeness and validity of the PBCR data was developed according to the International Agency for Research on Cancer (IARC) and the NAACCR guidelines. A 0–4 Likert based score and expert opinions (10 experts) were used to assess validity of the eight questionnaires/checklists. A modified Delphi method was applied to validate the checklists and questionnaires. Questions with a score higher than 3 remained in the final tools. ResultsThe final package consists of 546 questions including 108 (19.8%) for evaluation of guidelines, 54 (9.9%) for analysis and reports, 87 (15.9%) for governance and infrastructure, 155 (28.4%) for information technology, 21 (3.8%) for personnel knowledge and 121 (22.2%) for their practice. Additionally, data quality indicators were also considered for evaluation of PBCRs. ConclusionThis comprehensive tool can be used to show the gaps and limitations of the PBCR programs and provide informative clues for their improvement.

Annual Report to the Nation on the Status of Cancer, part I: National cancer statistics.

BACKGROUNDThe American Cancer Society (ACS), the Centers for Disease Control and Prevention (CDC), the National Cancer Institute (NCI), and the North American Association of Central Cancer Registries (NAACCR) collaborate to provide annual updates on cancer occurrence and trends in the United States.METHODSIncidence data were obtained from the CDC‐funded and NCI‐funded population‐based cancer registry programs and compiled by NAACCR. Data on cancer deaths were obtained from the National Center for Health Statistics National Vital Statistics System. Trends in age‐standardized incidence and death rates for all cancers combined and for the leading cancer types by sex, race, and ethnicity were estimated by joinpoint analysis and expressed as the annual percent change. Stage distribution and 5‐year survival by stage at diagnosis were calculated for breast cancer, colon and rectum (colorectal) cancer, lung and bronchus cancer, and melanoma of the skin.RESULTSOverall cancer incidence rates from 2008 to 2014 decreased by 2.2% per year among men but were stable among women. Overall cancer death rates from 1999 to 2015 decreased by 1.8% per year among men and by 1.4% per year among women. Among men, incidence rates during the most recent 5‐year period (2010‐2014) decreased for 7 of the 17 most common cancer types, and death rates (2011‐2015) decreased for 11 of the 18 most common types. Among women, incidence rates declined for 7 of the 18 most common cancers, and death rates declined for 14 of the 20 most common cancers. Death rates decreased for cancer sites, including lung and bronchus (men and women), colorectal (men and women), female breast, and prostate. Death rates increased for cancers of the liver (men and women); pancreas (men and women); brain and other nervous system (men and women); oral cavity and pharynx (men only); soft tissue, including heart (men only); nonmelanoma skin (men only); and uterus. Incidence and death rates were higher among men than among women for all racial and ethnic groups. For all cancer sites combined, black men and white women had the highest incidence rates compared with other racial groups, and black men and black women had the highest death rates compared with other racial groups. Non‐Hispanic men and women had higher incidence and mortality rates than those of Hispanic ethnicity. Five‐year survival for cases diagnosed from 2007 through 2013 ranged from 100% (stage I) to 26.5% (stage IV) for female breast cancer, from 88.1% (stage I) to 12.6% (stage IV) for colorectal cancer, from 55.1% (stage I) to 4.2% (stage IV) for lung and bronchus cancer, and from 99.5% (stage I) to 16% (stage IV) for melanoma of the skin. Among children, overall cancer incidence rates increased by 0.8% per year from 2010 to 2014, and overall cancer death rates decreased by 1.5% per year from 2011 to 2015.CONCLUSIONSFor all cancer sites combined, cancer incidence rates decreased among men but were stable among women. Overall, there continue to be significant declines in cancer death rates among both men and women. Differences in rates and trends by race and ethnic group remain. Progress in reducing cancer mortality has not occurred for all sites. Examining stage distribution and 5‐year survival by stage highlights the potential benefits associated with early detection and treatment. Cancer 2018;124:2785‐2800. © 2018 American Cancer Society

Frequency and distribution of primary site among gender minority cancer patients: An analysis of U.S. national surveillance data

BackgroundTransgender people and persons with disorders of sex development (DSD) are two separate categories of gender minorities, each characterized by unique cancer risk factors. Although cancer registry data typically include only two categories of sex, registrars have the option of indicating that a patient is transgender or has a DSD. MethodsData for primary cancer cases in 46 states and the District of Columbia were obtained from the North American Association of Central Cancer Registries (NAACCR) database for the period 1995–2013. The distributions of primary sites and categories of cancers with shared risk factors were examined separately for transgender and DSD patients and compared to the corresponding distributions in male and female cancer patients. Proportional incidence ratios were calculated by dividing the number of observed cases by the number of expected cases. Expected cases were calculated based on the age- and year of diagnosis-specific proportions of cases in each cancer category observed among male and female patients. ResultsTransgender patients have significantly elevated proportional incidence ratios (95% confidence intervals) for viral infection induced cancers compared to either males (2.3; 2.0–2.7) or females (3.3; 2.8–3.7). Adult DSD cancer patients have a similar distribution of primary sites compared to male or female patients but DSD children with cancer have ten times more cases of testicular malignancies than expected (95% confidence interval: 4.7–20). ConclusionThe proportions of certain primary sites and categories of malignancies among transgender and DSD cancer patients are different from the proportions observed for male or female patients.

Reported Incidence and Survival of Fallopian Tube Carcinomas: A Population-Based Analysis From the North American Association of Central Cancer Registries

Recognition that serous tubal intraepithelial carcinoma (STIC) may represent the first manifestation of many high-grade cancers that were once considered ovarian primary tumors has led to changes in diagnostic practices that could dramatically increase the reporting of tubal carcinomas in US population-based cancer registries. Further, increased detection of early-stage tubal carcinomas through increased recognition coupled with meticulous pathology processing protocols raises important unanswered questions about the clinical behavior of such lesions, which can only be answered using large data sets. However, rates of tubal carcinomas have not been recently analyzed. Accordingly, we analyzed population-based incidence and survival data for fallopian tube carcinoma in situ (CIS; an imperfect surrogate of STIC), tubal carcinomas, and for comparison, ovarian carcinomas, in the North American Association of Central Cancer Registries (NAACCR) registries. Total counts, standardized incidence rates, and stage-specific survival were computed using 30 NAACCR registries (1999-2012). Temporal incidence rate patterns were analyzed by joinpoint regression with estimates of annual percentage change (APC). All statistical tests were two-sided. Fallopian tube CIS incidence rates were stable from 1999 to 2002, then increased from 2002 to 2012 (APC = 16.2%, 95% confidence interval [CI] = 10.9% to 21.7%, P < .001). Rates of early- and late-stage tubal carcinomas showed similar patterns, whereas high-grade serous ovarian carcinoma rates were relatively stable. Five-year cause-specific survival was 97.9% (95% CI = 93.7% to 99.3%) for tubal CIS and 83.2% (95% CI = 77.3% to 87.7%) for early-stage high-grade serous tubal carcinoma. Reporting of tubal CIS and tubal carcinoma have increased in recent years, likely reflecting changes in pathology processing of specimens and diagnosis. Developing standardized reporting for tubal neoplasms is needed to enable analysis of outcomes for these comparatively uncommon but increasingly recognized tumors.

Annual Report to the Nation on the Status of Cancer, 1975-2014, Featuring Survival.

Background: The American Cancer Society (ACS), the Centers for Disease Control and Prevention (CDC), the National Cancer Institute (NCI), and the North American Association of Central Cancer Registries (NAACCR) collaborate to provide annual updates on cancer occurrence and trends in the United States. This Annual Report highlights survival rates. Methods: Data were from the CDC- and NCI-funded population-based cancer registry programs and compiled by NAACCR. Trends in age-standardized incidence and death rates for all cancers combined and for the leading cancer types by sex were estimated by joinpoint analysis and expressed as annual percent change. We used relative survival ratios and adjusted relative risk of death after a diagnosis of cancer (hazard ratios [HRs]) using Cox regression model to examine changes or differences in survival over time and by sociodemographic factors. Results: Overall cancer death rates from 2010 to 2014 decreased by 1.8% (95% confidence interval [CI] = –1.8 to –1.8) per year in men, by 1.4% (95% CI = –1.4 to –1.3) per year in women, and by 1.6% (95% CI = –2.0 to –1.3) per year in children. Death rates decreased for 11 of the 16 most common cancer types in men and for 13 of the 18 most common cancer types in women, including lung, colorectal, female breast, and prostate, whereas death rates increased for liver (men and women), pancreas (men), brain (men), and uterine cancers. In contrast, overall incidence rates from 2009 to 2013 decreased by 2.3% (95% CI = –3.1 to –1.4) per year in men but stabilized in women. For several but not all cancer types, survival statistically significantly improved over time for both early and late-stage diseases. Between 1975 and 1977, and 2006 and 2012, for example, five-year relative survival for distant-stage disease statistically significantly increased from 18.7% (95% CI = 16.9% to 20.6%) to 33.6% (95% CI = 32.2% to 35.0%) for female breast cancer but not for liver cancer (from 1.1%, 95% CI = 0.3% to 2.9%, to 2.3%, 95% CI = 1.6% to 3.2%). Survival varied by race/ethnicity and state. For example, the adjusted relative risk of death for all cancers combined was 33% (HR = 1.33, 95% CI = 1.32 to 1.34) higher in non-Hispanic blacks and 51% (HR = 1.51, 95% CI = 1.46 to 1.56) higher in non-Hispanic American Indian/Alaska Native compared with non-Hispanic whites. Conclusions: Cancer death rates continue to decrease in the United States. However, progress in reducing death rates and improving survival is limited for several cancer types, underscoring the need for intensified efforts to discover new strategies for prevention, early detection, and treatment and to apply proven preventive measures broadly and equitably.

Incidence of CNS tumors in Appalachian children.

Determine whether the risk of astrocytomas in Appalachian children is higher than the national average. We compared the incidence of pediatric brain tumors in Appalachia versus non-Appalachia regions, covering years 2000-2011. The North American Association of Central Cancer Registries (NAACCR) collects population-based data from 55 cancer registries throughout U.S. and Canada. All invasive primary (i.e. non-metastatic tumors), with age at diagnosis 0-19 years old, were included. Nearly 27,000 and 2200 central nervous system (CNS) tumors from non-Appalachia and Appalachia, respectively comprise the cohorts. Age-adjusted incidence rates of each main brain tumor subtype were compared. The incidence rate of pediatric CNS tumors was 8% higher in Appalachia, 3.31 [95% CI 3.17-3.45] versus non-Appalachia, 3.06, [95% CI 3.02-3.09] for the years 2001-2011, all rates are per 100,000 population. Astrocytomas accounted for the majority of this difference, with the rate being 16% higher in Appalachian children, 1.77, [95% CI 1.67-1.87] versus non-Appalachian children, 1.52, [95% CI 1.50-1.55]. Among astrocytomas, World Health Organization (WHO) grade I astrocytomas were 41% higher in Appalachia, 0.63 [95% CI 0.56-0.70] versus non-Appalachia 0.44 [95% CI 0.43-0.46] for the years 2004-2011. This is the first study to demonstrate that Appalachian children are at greater risk of CNS neoplasms, and that much of this difference is in WHO grade I astrocytomas, 41% more common. The cause of this increased incidence is unknown and we discuss the importance of this in relation to genetic and environmental findings in Appalachia.

Abstract P5-08-23: The share thoughts on breast cancer study: A Greater Plains collaborative cohort characterization project

Abstract Background. The Greater Plains Collaborative (GPC) is a new clinical data research network in PCORNet, the National Patient-Centered Clinical Research Network sponsored by the Patient-Centered Outcomes Research Institute to conduct patient-centered outcomes research and comparative effectiveness research. The Phase I GPC network brought together a diverse population of 10 million people across 1300 miles covering seven states with a combined area of 679 159 square miles. Using input from community members, breast cancer was selected as a focus for cohort building activities. Objective. To test the GPC's integrated data sources, technical components, and governance by demonstrating the ability to select, characterize, and achieve at least a 50% response rate for a cohort of breast cancer patients from across the GPC. Methods. Each participating medical center extracted, transformed and loaded North American Association of Central Cancer Registries (NAACCR)-formatted data from their institution's tumor registry into its Informatics for Integrating Biology and the Bedside (i2b2) research warehouse. The GPC i2b2 research warehouse is fully de-identified with re-identification possible when accompanied by an approved IRB protocol. From these data, each medical center selected a cohort of all patients age 18 or older diagnosed with breast cancer between January 2013 and May 2014. De-identified data files were submitted to the GPC Honest Broker who applied eligibility criteria and selected a random sample of 250 eligible patients from each center's file. Eligible patients were women with microscopically-confirmed ductal carcinoma in situ or invasive (but not metastatic) breast cancer diagnosed during the study period. Women who had previously been diagnosed with cancer per tumor registry records were excluded as were women known to be deceased at the time the sample was selected. The sample of patients plus a list of up to 10 replacement patients was provided to each center for re-identification and mailing. Patients participated in designing the study materials. Results. IRBs at 7 of 8 collaborating medical centers ceded IRB review to the University of Iowa IRB pursuant to the GPC reliance agreement. Upon patient advice to ensure a representative cohort, a mailed questionnaire with patient incentive was employed. All study materials were mailed in a single packet containing a cover letter from the participating medical center, a 21-page questionnaire, medical record consent and $10 incentive. Questionnaires were mailed over a six-week period beginning June 19, 2015 and one remailing to nonrespondents was conducted 4 weeks after the initial mailing. A total of 1,986 patients were invited and 1,235 (62.2%) responded. Signed consent to obtain information from medical records was obtained for 852 (69%). The survey dataset for consented subjects was linked to the research warehouse to obtain tumor and treatment data and diagnosis and procedure codes from billing sources. Conclusion. The GPC's integrated data sources, honest broker-mediated approach to extract data and apply standardized clinical criteria, IRB reliance model, and patient study design partners were implemented successfully. Citation Format: Chrischilles EA, Gryzlak B, McDowell BD, Connolly DW, Waitman LR. The share thoughts on breast cancer study: A Greater Plains collaborative cohort characterization project [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P5-08-23.