Journal of registry management最新文献

{"title":"Letter from the Editor.","authors":"Nadine Walker","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"51"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414196/pdf/jrm-50-51.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9995760","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":"Assessment of Registry-Based Surveillance Statistics Used for Cancer Control in the Dindigul District in South India.","authors":"R Swaminathan, P O Esmy, R Selvakumaran, P Sampath, R Sankaranarayanan","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Cancer incidence rates from the Dindigul district were lower by 50% than Chennai in Tamil Nadu for most cancers. This study describes the cancer surveillance statistics and provides an assessment of missing cases from routine registration in the Dindigul Ambilikkai Cancer Registry (DACR), covering a predominantly rural population in the Dindigul district.</p><p><strong>Method: </strong>A total of 21,214 incident cancers in the DACR during 2003-2017 were examined for this study. Cancer registration was carried out by active case-finding following standard international norms. A total of 12,541 incident cancers registered during 2003-2012 and followed through 2014 were used to estimate survival. Data on follow-up were obtained through a mixture of active and passive methods. Survival probability was estimated by actuarial methods. A random survey carried out independently was used to assess the quality of case ascertainment.</p><p><strong>Results: </strong>The age-standardized rate (ASR) per 100,000 population was higher among women (76.2) than men (61) in 2013-2017, with both sexes reporting a 17% increase compared to 2003-2007. The most common cancers were cervix (ASR,18.5) and female breast (ASR,17.1), with percentage changes of -19% and +46.1%, respectively. Lung cancer (ASR, 5.5) was top among men with an increasing trend (+57.1%). The percent change in ASR of mouth cancer showed opposite trends among men (+24.3%) and women (- 21.4%). The ASR of colorectal cancers almost doubled among men between 2003-2007 and 2013-2017 (3.9; +94.7%). The 5- and 10-year absolute survival for all cancers were 31% and 20%, respectively. Out of 365 incident cancers that occurred during 2003-2010 in the surveyed areas, 310 (84.9%) were already registered in the DACR, while 55 were newly identified from the survey (15.1%). Inadequate coverage of sources outside the Dindigul district was significant (<i>P</i> = .002), with the highest number of missed cases from hospitals under nongovernment sectors (58.3%). Underascertainment was higher among cancer patients living in hilly regions (60%) and border areas (47.4%) than in core regions (<i>P</i> = .05).</p><p><strong>Conclusion: </strong>Because of an enacted government order making cancer a notifiable disease, the registry-based cancer surveillance could be extended, covering a population of 80 million in a cost-effective manner with enhanced coverage and systematic evaluation of cancer-screening programs.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"26-33"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414206/pdf/jrm-50-26.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9990516","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 3","pages":"79"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629796/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522885","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":"Real-World Data and Paper-Based Disease Registries in the Small Island Developing State of Barbados During the COVID-19 Pandemic.","authors":"Shelly-Ann Forde,&nbsp;Jacqueline M Campbell,&nbsp;Kirt W Gill,&nbsp;Natasha P Sobers","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Significant data is being produced on the impact of COVID-19 on aspects of clinical care. However, less is known about the impact on real-world health data. The US Food and Drug Administration defines <i>real-world data</i> as \"data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources,\" including disease registries.¹ The methodology used by the Barbados National Registry (BNR)-active pursuit of first-hand clinical data using paper-based charts from multiple sources-makes it an ideal example of real-world data. Real-world data can overcome the barriers to clinical trials often present in small island developing states. This paper reviews the impact of the COVID-19 pandemic on the data of the BNR within the context of the real-world data cycle. Data collected retrospectively for 2016-2018, undergoing traceback during the pandemic, demonstrated a greater reliance on death certificate registration. A 38% reduction in the collection of new cases was noted in the postpandemic period compared to data collected in previous periods. The lack of access to source data delayed cancer registry reporting. We conclude that, given the challenges highlighted during the COVID-19 pandemic, more effort should be placed on providing timely access to real-world data for public health decision-making, particularly in small island developing states.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"40-42"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414192/pdf/jrm-50-40.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9990514","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":"Abstracting Head and Neck: A CTR's Perspective.","authors":"Melissa Chapman","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"67-68"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414193/pdf/jrm-50-67.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9991183","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":"Replenishing the Reporting Field from Within: From Partnership to Internship.","authors":"John LaDouceur, Michael Peyton, Nikkia Ray","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"99-100"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629805/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522888","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":"Description of the National Mortality Register of Panama.","authors":"Hedley Knewjen Quintana, Fernando Gutierrez, Fulvia Ibarra, Andy Ruiz, Cecilio Niño, Ilais Moreno Velásquez, Jorge Motta","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Introduction: </strong>The National Mortality Register (NMR) of Panama is a key element in demographic analysis and in acquiring an updated picture of population health in Panama. The main objectives of this study are to characterize the NMR and to enumerate its strengths and weaknesses.</p><p><strong>Methods: </strong>We describe the history, processes, and structure of the Vital Statistics Section of the National Institute of Statistics and Census (the curator of the NMR database). In addition, we discuss publication punctuality, underregistration of the data, the proportion of registered deaths certified by medical doctors, and the top 5 causes of death according to the 80 groups of the <i>International Classification of Diseases, Tenth Revision</i>. We also examine works derived from the register's data, from the first publication on its website (2002) until 2019.</p><p><strong>Results: </strong>The NMR procedures were described. The web reports of the NMR were performed with a delay of between 1 to 2 years. The underregistration of deaths in 2002-2019 was 14.7%, and the national yearly proportion of deaths certified by medical doctors was always above 90%. Hard-to-reach areas had higher underregistration proportions and fewer deaths certified by medical doctors. Information extracted from the NMR supports several national and international reports, geographic information systems, and studies. The most common causes of death between 2002 and 2019 were noncommunicable diseases.</p><p><strong>Conclusions: </strong>The NMR is a robust official information system. However, hard-to-reach areas require improvement in terms of the NMR. The NMR is used for publishing official reports, writing studies, and updating reports on the current health status of Panama in a timely fashion following international guidelines.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"155-164"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945919/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140176909","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":"Harnessing the Power of Cancer Registries to Advance Our Understanding of Pediatric Cancer.","authors":"Stephanie M Hill, Fernanda Silva Michels, Karen Knight, Johanna L Goderre, Tina Terranova, Tiffany Hayes, Betsy Kohler","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>In 2020, the North American Association of Central Cancer Registries (NAACCR) was awarded a contract with the National Cancer Institute (NCI) to begin coordination of a new National Childhood Cancer Registry (NCCR), which would build on the existing infrastructure among both Surveillance, Epidemiology, and End Results (SEER) and National Program of Cancer Registries central registries. NCI and NAACCR planned to use the NCCR to securely match children across registries and with external data sources such as genomic data, medical and pharmacy claims, and other novel sources for residential history, financial toxicity and social determinants of health to build a robust database for pediatric cancer reporting and research. These linkages will enable researchers to address issues surrounding late effects of cancer treatment, recurrence, subsequent malignant neoplasms, and other critical outcomes.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"80-81"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629798/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522883","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 New and Emerging Biomarker Data Collection: The Colorado Experience.","authors":"John Arend","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"38-39"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414198/pdf/jrm-50-38.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9990511","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-SUMMER 2023: ASSESSING COMPLETENESS OF CANCER TREATMENT DATA FROM AN ACADEMIC MEDICAL CENTER'S TUMOR REGISTRY THROUGH COMPARISON TO THE CENTRAL REGISTRY.","authors":"","doi":"","DOIUrl":"","url":null,"abstract":"<p><p><b>After reading the educational posters and completing the quiz, participants will be able to:</b> Describe the completeness of treatment information at an academic tumor registryUnderstand how data completeness at the hospital level affects researchDescribe the variables utilized in conducting this study.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"74"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414197/pdf/jrm-50-74.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9995769","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}