Journal of registry management最新文献

{"title":"Computer-Aided Coding: Productivity and Accuracy for Cancer Registries.","authors":"Giordana de Las Pozas, Kelly Merriman","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"69-71"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414207/pdf/jrm-50-69.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9995770","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 International SCN8A Patient Registry: A Scientific Resource to Advance the Understanding and Treatment of a Rare Pediatric Neurodevelopmental Syndrome.","authors":"Jennifer G Andrews,&nbsp;Maureen Kelly Galindo,&nbsp;Joshua B Hack,&nbsp;Joseph C Watkins,&nbsp;Gabrielle A Conecker,&nbsp;Michael F Hammer","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Genetic variants in the <i>SCN8A</i> gene underlie a wide spectrum of neurodevelopmental phenotypes that range from severe epileptic encephalopathy to benign familial infantile epilepsy to neurodevelopmental delays with or without seizures. A host of additional comorbidities also contribute to the phenotypic spectrum. As a result of the recent identification of the genetic etiology and the length of time it often takes to diagnose patients, little data are available on the natural history of these conditions. The International SCN8A Patient Registry was developed in 2015 to fill gaps in understanding the spectrum of the disease and its natural history, as well as the lived experiences of individuals with SCN8A syndrome. Another goal of the registry is to collect longitudinal data from participants on a regular basis. In this article, we describe the construction and structure of the International SCN8A Patient Registry, present the type of information available, and highlight particular analyses that demonstrate how registry data can provide insights into the clinical management of SCN8A syndrome.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"4-10"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414210/pdf/jrm-50-4.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9996739","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":"Remote Working Across the Miles.","authors":"Julia Espinoza","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"103"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629806/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522887","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":"Bridging the Gap: Building Certified Tumor Registrars.","authors":"Sarah Burton, Lori Koch","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"98"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629804/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522882","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-WINTER 2023: THE BURDEN OF RARE CANCERS IN NORTH AMERICA.","authors":"","doi":"","DOIUrl":"","url":null,"abstract":"<p><p><b>After reading the article and completing the quiz, participants will be able to:</b> Define rare cancersDescribe demographic patterns of the burden of rare cancers.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"176"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945920/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140176908","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 Guest Editor.","authors":"Recinda Sherman","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"110"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945915/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140178717","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":"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":"<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}