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Using the Incidence of Cervical Cancer Precursors to Assess the Impact of HPV Vaccination Efforts in Kentucky. 利用宫颈癌前兆的发病率评估肯塔基州 HPV 疫苗接种工作的影响。
Journal of registry management Pub Date : 2023-01-01
Thomas C Tucker, Eric B Durbin, Bin Huang, Kelly Pictor
{"title":"Using the Incidence of Cervical Cancer Precursors to Assess the Impact of HPV Vaccination Efforts in Kentucky.","authors":"Thomas C Tucker, Eric B Durbin, Bin Huang, Kelly Pictor","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"34-35"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414209/pdf/jrm-50-34.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9990515","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}
引用次数: 0
Hitting a Growth Spurt: Working to Improve the Collection of Pediatric Staging Systems. 刺激增长：努力改进儿科分期系统的收集。
Journal of registry management Pub Date : 2023-01-01
Angela Costantini
{"title":"Hitting a Growth Spurt: Working to Improve the Collection of Pediatric Staging Systems.","authors":"Angela Costantini","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"92-95"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629801/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522884","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}
引用次数: 0
Patients Will Benefit if We Expand Cancer Registries to Capture Method of Detection. 如果我们扩大癌症登记范围，采集检测方法，患者将从中受益。
Journal of registry management Pub Date : 2023-01-01
Peter R Eby
{"title":"Patients Will Benefit if We Expand Cancer Registries to Capture Method of Detection.","authors":"Peter R Eby","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"113-115"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945917/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140178712","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}
引用次数: 0
Letter from the Editor. 编辑来信。
Journal of registry management Pub Date : 2023-01-01
Nadine Walker
{"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}
引用次数: 0
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":"<p><strong>Purpose: </strong>To assess the association between travel distance to an academic health system and overall survival for patients with human papillomavirus (HPV)-associated cancers.</p><p><strong>Methods: </strong>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 <i>short</i> (<25 miles), <i>intermediate</i> (25-74.9 miles), or <i>long</i> (≥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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","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}
引用次数: 0
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
{"title":"Computer-Aided Coding: Productivity and Accuracy for Cancer Registries.","authors":"Giordana de Las Pozas,&nbsp;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}
引用次数: 0
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,&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}
引用次数: 0
Remote Working Across the Miles. 远距离工作。
Journal of registry management Pub Date : 2023-01-01
Julia Espinoza
{"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}
引用次数: 0
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
{"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}
引用次数: 0
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
{"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}
引用次数: 0
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