Journal of registry management最新文献

{"title":"Assessing Completeness of Cancer Treatment Data from an Academic Medical Center's Tumor Registry Through Comparison to the Central Registry.","authors":"Bradley D McDowell,&nbsp;Suzanne E Bentler,&nbsp;Michele M West,&nbsp;Amanda R Kahl,&nbsp;Sarah H Nash,&nbsp;Jason T Brubaker,&nbsp;Bobbi Matt,&nbsp;Mary E Charlton","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Researchers often rely on hospital tumor registry data to provide comprehensive cancer therapy information. The purpose of this study was to determine the completeness of treatment information found in the abstracted records of patients seen at an academic medical center located in a rural Midwestern state.</p><p><strong>Approach: </strong>The cohort included 846 Iowa residents diagnosed with a single malignant tumor of the female breast, colon/rectum, lung, pancreas, or prostate in 2017-2018 with an abstract recorded by the academic medical center and at least 1 other hospital. Treatment/no treatment agreement between the academic medical center's abstract and the central registry's consolidated abstract was examined for the following summary variables of the North American Association of Central Cancer Registries (NAACCR): surgery of the primary site, chemotherapy, radiation therapy, immunotherapy, and hormone therapy. Treatment summary variables from the academic medical center abstract that agreed with the corresponding variables from the central registry abstract were classified as <i>concordant</i>. The proportion of concordance for each treatment modality was the outcome measure, and 95% confidence intervals were calculated with the Agresti-Coull method. Concordance was also examined at the specific treatment level.</p><p><strong>Results: </strong>There was high concordance between the treatment information recorded in the academic medical center and the central registry records. The average proportion of treatment/no treatment agreement across all treatment modalities and cancer sites was 0.97 (SD, 0.02). Concordance remained high even when examining specific treatments (average concordance, 0.95; SD, 0.04). The lowest treatment/no treatment concordance proportion was 0.92 (95% CI, 0.86-0.96) for chemotherapeutic treatment of pancreatic cancer. We also found that the academic medical center's summary variables captured most treatments given at other facilities, ranging from 74.4% capture of immunotherapy to 88.2% capture of surgery of the primary site.</p><p><strong>Conclusions: </strong>These results indicate that NAACCR-formatted, summary variables from the academic medical center's tumor registry are likely to provide comprehensive treatment information for those individuals diagnosed or treated in this setting. Analyses of either the academic medical record registry records or consolidated records from the central registry should yield similar results. Future research should establish whether similar findings are obtained at other medical centers.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"52-56"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414202/pdf/jrm-50-52.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10038207","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cancer Registry Data Visualized through Dashboards.","authors":"Lindsey Mason,&nbsp;Joy Joseph","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"72-73"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414194/pdf/jrm-50-72.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10052297","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Use of Project Management Tool for Increased Efficiency and Project Management in the Missouri Cancer Registry.","authors":"L Ham, I Zachary","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"97"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629803/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522890","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Virtual Training Platform as a Recruitment Tool for Island Cancer Registry Proved Effective.","authors":"Naomi Del Mundo, Lymona Refugia, Janos Baksa, Lee Buenconsejo-Lum","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"101-102"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629807/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522891","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Rationale and Methodologic Approach for Assessing Ovarian Cancer Treatment and Gynecologic Oncologist Involvement in the Midwest Region of the United States.","authors":"Diane Ng, Wilhelmina Ross, Maricarmen Traverso-Ortiz, Sun Hee Rim, Jennifer M Wike, Angela R Moore","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"85-91"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629802/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522886","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementation and Evaluation of the California Cancer Registry Patient Contact Database.","authors":"Ani S Movsisyan Vernon, Brenda M Hofer, Arti Parikh-Patel, Theresa H M Keegan","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"165-166"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945916/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140178715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Who Owns My Identity?","authors":"T Patrick Hill","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"111-112"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945924/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140176915","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using Chart Abstractions to Improve Risk Factor Case Definitions in Michigan.","authors":"Lauren Spadafora,&nbsp;Erika Doran-DeCaire,&nbsp;Beth Anderson,&nbsp;Georgetta Alverson","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"65-66"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414208/pdf/jrm-50-65.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10006235","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Burden of Rare Cancers in North America.","authors":"Brenda M Hofer, Hannah K Weir, Angela Eckstrand, Keisha Musonda, Recinda Sherman","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"123-137"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945927/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140176911","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementation of a Standardized Template to Improve the Timeliness and Consistency of Early Case Reporting for Pediatric, Adolescent, and Young Adult Cancer Cases to the Rhode Island Cancer Registry.","authors":"Paulette Zinkann, Kioka Jenkins, Nancy Lebrun, Lisa Garcia, Christina Hiller, Erin Stair","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"170-172"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945926/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140178716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}