Journal of registry management最新文献

Introduction: A study was conducted to examine treatment patterns and outcomes among women with a primary ovarian cancer diagnosis in the Midwest region of the United States, an area that has relatively fewer gynecologic oncologists (GOs) and diverse geography with respect to urban and rural areas. In this paper, we examine the methodology of working with central cancer registries (CCRs) to collect additional data items, including those related to GO involvement and detailed treatment.

Methods: Westat recruited 3 state CCRs from the Midwest to participate in the study. Cases were randomly selected from 2010-2012 ovarian, fallopian tube, or primary peritoneal cancer diagnoses in participating registry databases that met the selection criteria. CCRs abstracted additional information for selected cases, including study-specific data items regarding surgery and chemotherapy, GO involvement, and recurrence, where applicable.

Results: Abstracts with study-specific data items were collected among a total of 1,003 incidence ovarian cancer cases, with 432 additional abstracts for those cases identified as having recurrence. Variables with the highest frequency of unknowns were mostly for patients who had chemotherapy. While data were available for whether the patient received chemotherapy, the specifics about that chemotherapy were not always available, with dosing and unit being unknown in 27% of cases. There were several challenges with initiating and completing this study associated with recruitment, the data collection timeline, and the collection of study-specific data items.

Conclusion: This paper outlines the methodologic approach and experience of collecting additional surgical and chemotherapy treatment variables and data on GO involvement in care from medical records. Experiences from this study provide critical lessons that can be applied to future data collection in this area. Ultimately, the accurate collection of these elements enables researchers to identify groups of women who are not receiving the benefit of optimal surgery or GO care and provides critical data on interventions for improved outcomes and survival in ovarian cancer patients.

Background: Rare cancers are difficult to study owing to their infrequent diagnosis. Using aggregate incidence data from population-based cancer registries in Europe, the Surveillance of Rare Cancers in Europe project compiled a list of clinically relevant, topography and morphology defined rare cancers operationally defined as having a crude annual incidence rate of <6 per 100,000 persons. In 2020, this list of rare cancers was updated. The objective of this study was to assess the utility of a rare cancer recode variable for use in the Cancer in North America (CiNA) dataset and to provide a first look at the burden of rare cancers in Canada and the United States.

Methods: Data were obtained from 62 registries in Canada and the United States that met North American Association of Central Cancer Registries (NAACCR) high-quality data standards. The list of rare cancers was programmed as a Rare Cancer Classification variable within SEER*Stat. SEER*Stat was used to estimate case counts and crude and age-specific incidence rates per 100,000 for cancers diagnosed 2015-2019 by age at diagnosis, country, and country-specific geographic regions in Canada and the United States, and by race/ethnicity in the United States.

Results: In Canada and the United States, 21% and 22% of all invasive cancers were classified as rare, respectively. The percentage of rare cancers ranged between 18% to 21% across geographic regions in Canada and the United States. Children (aged 0-14 years) had the highest percentage and lowest incidence rates of rare cancers. The percentage of rare cancers decreased, and incidence increased with increasing age. In the United States, Hispanics had the highest percentage (27%) and non-Hispanic Whites and non-Hispanic Blacks the lowest percentage (21%) of rare cancers.

Conclusions: While individual rare cancers are infrequently diagnosed, in aggregate, they account for a substantial percentage of all cancers diagnosed in the population and pose a substantial public health burden. We report variations in percentage of rare cancers by age, and race/ethnicity (United States only). Such variations in the burden of these cancers may suggest possible areas for public health research.