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Principal Investigator: Timothy L. Lash
Organization: EMORY UNIVERSITY
Fiscal Year: 2024
Award: $653,500
Funding agency: National Cancer Institute
PROJECT SUMMARY
Surveillance for cancer incidence and mortality is crucial to cancer control and cancer research. Cancer
registries are the basis for allocating public health resources as well as designing and assessing interventions
to control cancer morbidity and mortality through prevention, screening, and treatment. The most fundamental
aspect of any cancer registry is “completeness,” which is a measure of the proportion of true cancer cases
captured by a registry within a defined catchment area and period. In concept, completeness is a simple
proportion, equal to the number of cancer cases recorded in a registry divided by the true number of cancer
cases occurring in the catchment area over the period. Measuring cancer registry completeness is, however,
extremely challenging. A registry is meant to include all cancer cases, so the number of recorded cases is also
the best available measure of the true number. To address this fundamental problem, the most common
method to estimate completeness calculates the expected number of cancer registry cases and compares that
expected number to the reported number. These extant measures leave out the two most common cancers
(prostate and breast) as well as less common cancers and universally include data only from Black people and
White people, therefore routinely misestimating completeness for registries covering populations with high
proportions of Asian people, Native American people, and people of Hispanic ethnicity.
We propose a new comprehensive method to address these shortcomings. Our method will allow
registries to determine which populations and geographic areas are contributing to a lack of completeness and
help them to identify strategies most likely to improve completeness going forward. Ours aims are: (a) Develop
methods for estimating registry-specific completeness specific to county, race and ethnicity, age, sex, cancer
site, and calendar year—borrowing information across categories in a principled way—and adjusting for time
trends in survival, reporting lags, and spatial correlation; (b) Develop methods to decompose completeness by
demographic (race/ethnicity and sex) and geographic (rural/urban) characteristics, allowing individual registries
to improve future completeness by targeting specific populations or regions for which data are less complete;
and (3) Adapt the completeness and decomposition methods to a user-friendly tool, featuring intuitive control
over model parameters, and guided, semi-automated code execution, and curated output to assure
transparency and reproducibility by cancer registries. By achieving these aims, this research project will (1)
improve the rigor and reproducibility of measurement of completeness for US cancer registries, (2) guide
choices of where registries can invest resources to optimize overall and group-specific completeness, (3)
demonstrate how differential lack of completeness has biased the current understanding of cancer disparities,
and (4) provide transparent and replicable computational resources linked with easily updated data sources.
Terms: <Access to Care><Address><Age><American><Asian group><Asian individual><Asian people><Asian population><Asians><Behavioral><Black Populations><Black group><Black individual><Black people><Blacks><Breast><COVID crisis><COVID epidemic><COVID pandemic><COVID-19 crisis><COVID-19 epidemic><COVID-19 era><COVID-19 global health crisis><COVID-19 global pandemic><COVID-19 health crisis><COVID-19 pandemic><COVID-19 period><COVID-19 public health crisis><COVID-19 years><Calendar><Cancer Control><Cancer Control Science><Cancer Detection><Cancers><Catchment Area><Categories><Certification><Characteristics><Code><Coding System><County><Data><Data Sources><Disparities><Disparity><Ethnic Origin><Ethnicity><Federal Government><Funding Agency><Funding Source><Future><Genetic Predisposition><Genetic Predisposition to Disease><Genetic Susceptibility><Genetic propensity><Geographic Area><Geographic Locations><Geographic Region><Geographical Location><Geography><Goals><Health Resources><Health Services Accessibility><Hispanic Populations><Hispanic group><Hispanic individual><Hispanic people><Hispanics><Incidence><Individual><Inherited Predisposition><Inherited Susceptibility><Intervention><Intervention Strategies><Intuition><Investments><Joints><Link><Malignant Neoplasms><Malignant Tumor><Measurement><Measures><Methodology><Methods><Modeling><Morbidity><Morbidity - disease rate><National Government><Native American group><Native American individual><Native American people><Native American population><Outcome><Output><Persons><Policies><Population><Prevention><Prostate><Prostate Gland><Prostatic Gland><Public Health><QOC><Quality of Care><R-Series Research Projects><R01 Mechanism><R01 Program><Race><Races><Registries><Reporting><Reproducibility><Research><Research Grants><Research Project Grants><Research Projects><Research Resources><Resources><Risk Factors><Rural><SARS-CoV-2 epidemic><SARS-CoV-2 global health crisis><SARS-CoV-2 global pandemic><SARS-CoV-2 pandemic><SARS-coronavirus-2 epidemic><SARS-coronavirus-2 pandemic><Severe Acute Respiratory Syndrome CoV 2 epidemic><Severe Acute Respiratory Syndrome CoV 2 pandemic><Severe acute respiratory syndrome coronavirus 2 epidemic><Severe acute respiratory syndrome coronavirus 2 pandemic><Temporal trend><Time><Time trend><Trends over time><Update><access disparities><access to health services><access to services><access to treatment><accessibility disparities><accessibility to health services><ages><anti-cancer research><availability of services><cancer disparity><cancer health disparity><cancer location><cancer registry><cancer research><cancer site><cancer-related health disparity><cancers that are rare><care access><computational resources><computing resources><coronavirus disease 2019 crisis><coronavirus disease 2019 epidemic><coronavirus disease 2019 global health crisis><coronavirus disease 2019 global pandemic><coronavirus disease 2019 health crisis><coronavirus disease 2019 pandemic><coronavirus disease 2019 public health crisis><coronavirus disease crisis><coronavirus disease epidemic><coronavirus disease pandemic><coronavirus disease-19 global pandemic><coronavirus disease-19 pandemic><data registry><depository><design><designing><disparities in access><disparity in cancer><genetic etiology><genetic mechanism of disease><genetic vulnerability><genetically predisposed><geographic site><health service access><health services availability><improved><inequality in access><inequity in access><inequity in accessibility><interventional strategy><intuitive><malignancy><mortality><neoplasm registry><neoplasm/cancer><pandemic><pandemic caused disruption><pandemic created disruption><pandemic disease><pandemic disruption><pandemic induced disruption><pandemic related disruption><racial><racial background><racial origin><rare cancer><rare malignancy><rare tumor><repository><screening><screenings><service availability><severe acute respiratory syndrome coronavirus 2 global health crisis><severe acute respiratory syndrome coronavirus 2 global pandemic><sex><surveillance data><tool><treatment access><trend><user-friendly>