Journal of registry management最新文献_第6页

The Relation Between Travel Distance and Overall Survival for HPV-Associated Cancers in a High-Burden State. 高负担州人乳头瘤病毒相关癌症患者的旅行距离与总生存率之间的关系。

Journal of registry management Pub Date : 2023-01-01

Sameer Vali Gopalani, Hanh Dung Dao, Lance Ford, Janis E Campbell, Jennifer D Peck, Sixia Chen, Ashley Comiford, Nancy Etzold, Amanda E Janitz

{"title":"The Relation Between Travel Distance and Overall Survival for HPV-Associated Cancers in a High-Burden State.","authors":"Sameer Vali Gopalani, Hanh Dung Dao, Lance Ford, Janis E Campbell, Jennifer D Peck, Sixia Chen, Ashley Comiford, Nancy Etzold, Amanda E Janitz","doi":"","DOIUrl":"","url":null,"abstract":"Purpose: To assess the association between travel distance to an academic health system and overall survival for patients with human papillomavirus (HPV)-associated cancers.Methods: Using hospital-based cancer registry data from 2005-2019, we calculated unidirectional travel distance from each patient's geocoded address to our academic health center through network analysis. We categorized distance as short (<25 miles), intermediate (25-74.9 miles), or long (≥75 miles). The primary outcome was time from the date of initial diagnosis to the date of death or last contact. We used multivariable Cox proportional hazards regression to evaluate the association between travel distance and overall survival. We also estimated the adjusted observed 5-year survival rate.Results: Patients with HPV-associated cancers traveling distances that were intermediate (hazard ratio [HR], 1.23; 95% CI, 1.06-1.43) and long (HR, 1.15; 95% CI, 1.01-1.32) had a higher hazard of death than the short-distance group. The adjusted 5-year observed survival rates for HPV-associated cancers were lowest in the intermediate-distance group (60.4%) compared with the long-(62.6%) and short-distance (66.2%) groups.Conclusions: Our findings indicate that travel distance to an academic health center was associated with overall survival for patients with HPV-associated cancers, reflecting the importance of considering travel burden in improving patient outcomes.","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"11-18"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414199/pdf/jrm-50-11.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9990513","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}

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Computer-Aided Coding: Productivity and Accuracy for Cancer Registries. 计算机辅助编码:癌症登记处的效率和准确性。

Journal of registry management Pub Date : 2023-01-01

Giordana de Las Pozas, Kelly Merriman

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The International SCN8A Patient Registry: A Scientific Resource to Advance the Understanding and Treatment of a Rare Pediatric Neurodevelopmental Syndrome. 国际SCN8A患者注册:促进对罕见小儿神经发育综合征的理解和治疗的科学资源。

Journal of registry management Pub Date : 2023-01-01

Jennifer G Andrews, Maureen Kelly Galindo, Joshua B Hack, Joseph C Watkins, Gabrielle A Conecker, Michael F Hammer

{"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, Maureen Kelly Galindo, Joshua B Hack, Joseph C Watkins, Gabrielle A Conecker, Michael F Hammer","doi":"","DOIUrl":"","url":null,"abstract":"Genetic variants in the SCN8A 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.","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}

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Remote Working Across the Miles. 远距离工作。

Journal of registry management Pub Date : 2023-01-01

Julia Espinoza

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Bridging the Gap: Building Certified Tumor Registrars. 弥合差距：建立注册肿瘤登记机构。

Journal of registry management Pub Date : 2023-01-01

Sarah Burton, Lori Koch

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Journal of Registry Management Continuing Education Quiz-WINTER 2023: THE BURDEN OF RARE CANCERS IN NORTH AMERICA. 登记管理期刊》继续教育测验--2023 年冬季：北美罕见癌症的负担。

Journal of registry management Pub Date : 2023-01-01

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Letter from the Guest Editor. 特邀编辑的来信

Journal of registry management Pub Date : 2023-01-01

Recinda Sherman

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Monoclonal Gammopathy of Undetermined Significance and Multiple Myeloma Survival Among Hispanics Living in Puerto Rico. 生活在波多黎各的西班牙裔人中意义未定的单克隆丙种球蛋白病和多发性骨髓瘤存活率。

Journal of registry management Pub Date : 2023-01-01

Maira A Castañeda-Avila, Tonatiuh Suárez Ramos, Carlos R Torres-Cintrón, Axel Gierbolini-Bermúdez, Guillermo Tortolero-Luna, Karen J Ortiz-Ortiz

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Journal of Registry Management Continuing Education Quiz-SPRING 2023: The Relation Between Travel Distance and Overall Survival for Hpv-Associated Cancers in a High Burden State. 注册管理杂志继续教育测验-春季2023:高负担状态下hpv相关癌症的旅行距离与总生存率之间的关系。

Journal of registry management Pub Date : 2023-01-01

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History of the National Cancer Registry of Panama. 巴拿马国家癌症登记处的历史。

Journal of registry management Pub Date : 2023-01-01

Hedley Knewjen Quintana, Ilais Moreno Velásquez, Mirka Rodríguez, Beatriz Gómez, Moisés Espino, Plinio Valdés, Reina Roa

{"title":"History of the National Cancer Registry of Panama.","authors":"Hedley Knewjen Quintana, Ilais Moreno Velásquez, Mirka Rodríguez, Beatriz Gómez, Moisés Espino, Plinio Valdés, Reina Roa","doi":"","DOIUrl":"","url":null,"abstract":"Background: 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.Methods: 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.Results: 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).Discussion: 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.","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}

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