Journal of registry management最新文献

{"title":"Quality Assurance and Technology-Enabled Curation of Oncology Real-World Data: The Importance of Individual Quality Reviews.","authors":"Katherine Levie,&nbsp;Betsy Cromartie,&nbsp;Marianna Wicks,&nbsp;Joseph Burkhart,&nbsp;Sarah Kennedy,&nbsp;Dana Hess,&nbsp;Frank Wolf,&nbsp;Louise Widmer","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Quality assurance is the foundation of clinical data abstraction. Meaningful insights can only be drawn from quality data. Through the development of robust quality-control processes for technology-enabled curation, Syapse's certified tumor registrars enrich real-world oncology data, supporting oncology patient care and research for a network of community health systems.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"60-63"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414195/pdf/jrm-50-60.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9995761","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-FALL 2023: THE TRAJECTORY OF PEDIATRIC CANCER DATA AND COLLECTION IN THE UNITED STATES.","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 primary goal of the National Childhood Cancer Registry (NCCR)Understand the purpose of the Pediatric Site-Specific Data Items (SSDI) Work GroupDescribe the Toronto Pediatric Cancer Stage Guidelines.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"104"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629808/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522881","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 Trajectory of Pediatric Cancer Data and Collection in the United States.","authors":"Angela Costantini, Fernanda Silva Michels, Jennifer Ruhl, Stephanie Hill, Betsy Kohler, Serban Negoita","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The past several years have been marked by substantial growth in pediatric cancer data and collection across the world. In the United States, multiple projects and standard setters have laid a foundation for the growth of this data, and the need for an overview and explanation of a few of the programs directly relevant to cancer registrars has become apparent. This article will discuss 3 initiatives that highlight many of the efforts and intricacies involved with the collection of pediatric cancer data in the cancer registry world: the National Childhood Cancer Registry, the Toronto Pediatric Cancer Stage Guidelines, and the Pediatric Site-Specific Data Items Work Group.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 3","pages":"82-84"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629799/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522889","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":"Human Papillomavirus Detection in Scrotal Squamous Cell Carcinoma: Case Series from a Population-Based Cancer Registry.","authors":"Jacqueline M Mix, Maureen J Miller, Troy D Querec, Teresa M Darragh, Mona Saraiya, Sameer V Gopalani, Charles F Lynch, Trevor D Thompson, April Greek, Thomas C Tucker, Edward S Peters, Elizabeth R Unger","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Introduction: </strong>Scrotal squamous cell carcinomas (SCCs) are rare malignancies that are not considered to be associated with the human papillomavirus (HPV) by the International Agency for Research on Cancer. However, recent studies have detected HPV in these cancers. We sought to determine the presence of HPV types among scrotal cancer cases identified through population-based cancer registries.</p><p><strong>Methods: </strong>Primary scrotal SCCs diagnosed from 2014 to 2015 were identified, and tissue sections from formalin-fixed, paraffin-embedded tissue blocks were obtained for laboratory testing. A pathology review was performed to confirm morphology. HPV testing was performed using L1 consensus polymerase chain reaction analysis. Immunohistochemistry was used to evaluate p16INK4a (p16) expression.</p><p><strong>Results: </strong>Five cases of scrotal SCC were identified from 1 cancer registry. Age at diagnosis ranged from 34 to 75 years (median, 56 years). Four cases were non-Hispanic White, and 1 was non-Hispanic Black. The morphologic subtype of 4 cases was keratinizing (usual), and 1 case was verrucous (warty) histologic subtype. Two of the usual cases of SCC were HPV-negative and p16-negative, and 2 were positive for HPV16 and p16. The verrucous (warty) SCC subtype case was HPV6-positive and p16-negative.</p><p><strong>Conclusions: </strong>The presence of HPV16 and p16 overexpression in the examined tissue specimens lends additional support for the role of HPV in the etiology of scrotal SCC.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"116-121"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945928/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140176910","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":"Using LexisNexis to Improve Social Security Number Information in the New York State Cancer Registry.","authors":"Baozhen Qiao, April A Austin, Jamie Musco, Tabassum Insaf, Maria J Schymura","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Social Security numbers (SSNs) collected by cancer surveillance registries in the United States are used for patient matching, deduplication, follow-up, and linkage studies. However, due to various reasons, a small proportion of patient records have missing or inaccurate SSNs. Recently, New York State Cancer Registry (NYSCR) data have been linked to LexisNexis data to obtain patient demographic information, including SSNs. The current study evaluated the feasibility of using LexisNexis to improve SSN information in the NYSCR.</p><p><strong>Materials and methods: </strong>Patients diagnosed during the years 2005-2016, aged 21 or older, in the NYSCR were linked to LexisNexis data. For the matched patients, LexisNexis returned demographic information, including SSNs as available. Percentages of patients without LexisNexis matches or without LexisNexis SSNs were examined by demographic characteristics. We used multivariate logistic regression analyses to further evaluate how patient demographic characteristics affected the likelihood of no LexisNexis matches or of no SSNs returned. For patients with SSNs returned, LexisNexis SSNs were compared with registry SSNs. If patients had prior missing registry SSNs or if LexisNexis SSNs were inconsistent with registry SSNs, we used Match*Pro to review and verify match status. Registry SSNs were updated for those confirmed to be true matches. Improvement of SSNs was assessed based on percentage reduction of missingness.</p><p><strong>Results: </strong>Of 1,396,078 patient records submitted for LexisNexis linkage, 1.6% were not matched. Among those matched, 1.5% did not have SSNs returned. Multivariate logistic regression analyses indicated that patients who were female, Black, Asian Pacific Islander (API), Hispanic, born outside the United States, deceased, or living in poorer census tracts were more likely to not have LexisNexis matches, or to not have SSNs returned. Among 47,271 patients with missing registry SSNs (3.4%), 26,895 had SSNs returned from LexisNexis, and 24,919 were confirmed to be true matches. After registry SSNs updates, the percentage of SSN missingness was reduced to 1.7%, with a larger absolute reduction observed among those who were younger than 60 years, API, or alive. For 33,057 patients with inconsistent SSNs, 11,474 were due to incorrect consolidations of SSNs in the registry, and those SSNs were subsequently fixed.</p><p><strong>Conclusions: </strong>LexisNexis is a valuable resource for improving the quality of SSN information in registries. Our results showed that the overall percentage of patients with missing SSNs was reduced from 3.4% to 1.7% after LexisNexis link-age, and SSNs that were initially incorrectly consolidated for some patients were also identified and subsequently fixed. However, the magnitude of SSN improvement varied by patient demographic characteristics. Data quality improvements often require resources, and this evaluation can as","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"138-143"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945922/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140176913","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 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}