Journal of registry management最新文献

{"title":"Monoclonal Gammopathy of Undetermined Significance and Multiple Myeloma Survival Among Hispanics Living in Puerto Rico.","authors":"Maira A Castañeda-Avila, Tonatiuh Suárez Ramos, Carlos R Torres-Cintrón, Axel Gierbolini-Bermúdez, Guillermo Tortolero-Luna, Karen J Ortiz-Ortiz","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"167-169"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945921/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140178718","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":"Letter from the Editor.","authors":"Nadine Walker","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"3"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414204/pdf/jrm-50-3.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9990510","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, 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":"<i>Journal of Registry Management</i> Continuing Education Quiz-SPRING 2023: The Relation Between Travel Distance and Overall Survival for Hpv-Associated Cancers in a High Burden State.","authors":"","doi":"","DOIUrl":"","url":null,"abstract":"<p><p><b>After reading the educational posters and completing the quiz, participants will be able to:</b> Understand the association between travel distance to an academic health system and overall survival for patients with HPV-associated cancersDescribe how travel burden affects diagnosis, treatment, and quality of life for cancer patientsUnderstand the demographic, socioeconomic, and clinical characteristics of patients within the study population.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"43"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414201/pdf/jrm-50-43.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9990512","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":"History of the National Cancer Registry of Panama.","authors":"Hedley Knewjen Quintana,&nbsp;Ilais Moreno Velásquez,&nbsp;Mirka Rodríguez,&nbsp;Beatriz Gómez,&nbsp;Moisés Espino,&nbsp;Plinio Valdés,&nbsp;Reina Roa","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>The National Cancer Registry of Panama (NCRP) was established in 1974. In 1984, histological confirmation became mandatory. The now pathology-based registry has evolved and has been a population-based cancer registry (PBCR) since 2012 with cancer-specific Web-based reporting software. Herein, we characterize the main features in its development that may help readers understand its evolution and improvements that are needed to be in line with international standards.</p><p><strong>Methods: </strong>We describe the major components of the NCRP using its structure, processes, and a results framework for 3 major periods since its inception: 1974-1999, 2000-2011, and 2012 to present.</p><p><strong>Results: </strong>The NCRP has always been linked to the Ministry of Health of Panama. Until the end of its second period, it operated as a pathology-based registry and all staff worked part time. Currently, the NCRP is based on passive reporting through a Web-based system set up for both public and private health institutions, covering 77% of the existing health-care institutions in the nation. The number of cases with unknown age were less than 10 per year and primary tumors with unknown origin were at most 3%. The proportion of death certificate only (DCO) cases decreased 5% in 18 years. Men are more likely to have DCO than women (odds ratio, 1.53; 95% CI, 1.48-1.58).</p><p><strong>Discussion: </strong>The NCRP has evolved, achieving significant improvements and progress over the years. Yet, much remains to be done. To provide internationally comparable, valid, and timely cancer incidence data, the NCRP should continue to improve its quality and coverage and provide continuous staff training on cancer registry procedures.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"19-25"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414200/pdf/jrm-50-19.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10003022","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":"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":"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":"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":"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}