Journal of registry management最新文献

{"title":"Data Sharing for The Common Good: An Ethical Obligation?","authors":"T Patrick Hill","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 2","pages":"54-55"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198408/pdf/jrm-49-54.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9949846","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 Statewide Voter File Proves Useful to Obtain Physical Address for Cases with Only PO Box Reported.","authors":"Heather Zimmerman, Debbi Lemons","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 1","pages":"37-38"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198426/pdf/jrm-49-37.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9575914","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":"Prostate Cancer Trends in Montana.","authors":"Heather J N Zimmerman","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Prostate cancer is the most common cancer among men in Montana and the second-most-common cause of cancer deaths. In 2014, prostate cancer incidence in Montana started increasing significantly, even as incidence in the United States overall stayed about the same. The increased incidence was not accompanied by an increase in prostate cancer mortality. Trends in local stage incidence and incidence among men aged 65 to 79 years mirrored the trends in overall prostate cancer incidence and suggest that changes are due to screening behavior. However, it is difficult to determine what may have caused increased screening among Montana men since 2014. Monitoring prostate cancer incidence and mortality is an important tool in determining if there is a change in prostate cancer disease burden or in overdiagnosis, and informs planning for possible public health intervention.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 4","pages":"190-193"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10229193/pdf/jrm-49-190.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9611360","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 2022: Identifying Duplicate Cancer Cases Across State Boundaries: Pseudonymization as a Method of Encrypt Identifiers.","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 how duplicate cancer cases could arise across state registriesUnderstand the impact of the OpenPseudonymiser application on information transfer between statesDescribe how to increase efficiency in the process.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 3","pages":"99"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198387/pdf/jrm-49-99.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9945194","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":"Expanding Research Access to West Virginia Cancer Registry Data.","authors":"Markie P McCoy","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 1","pages":"45"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198401/pdf/jrm-49-45.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9569229","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":"Identifying Factors Associated with Loss to Follow-up Among Patients Reported to the New York State Cancer Registry.","authors":"Baozhen Qiao,&nbsp;April A Austin,&nbsp;Maria J Schymura,&nbsp;Xiuling Zhang,&nbsp;Colleen G Sherman","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>State cancer registries in the United States are data sources for estimating population-based cancer survival. However, the completeness of patient follow-up can affect the accuracy of survival estimates. Like many registries, the New York State Cancer Registry (NYSCR) conducts patient follow-up largely through linkages with other data sources. Even after expending great effort on linkages, a small proportion of patients remain lost to follow-up (LTFU). In this study, we identified factors that are associated with the likelihood of LTFU in the NYSCR.</p><p><strong>Methods: </strong>First primary cancers (sequence number, 00 or 01 and excluding death-certificate- and autopsy-only cases) diagnosed during 2000-2018 among New York State residents were selected for study. All patients were followed through December 31, 2018. Based on each patient's vital status and last contact date, follow-up status was categorized into 2 groups: patients LTFU and patients not LTFU. Patients LTFU were examined by demographic and tumor characteristics. Multivariate logistic regression analyses were performed to evaluate the association between demographic/tumor characteristics and likelihood of LTFU. For patients LTFU, the timing of LTFU (within 1 year, 1 to <5 years, 5 to <10 years, or >10 years) was further described. LTFU rates within 5 years after cancer diagnosis were also examined.</p><p><strong>Results: </strong>Among 1,797,228 patients, 74,722 were LTFU prior to December 31, 2018, representing 4.2% of all patients and 7.6% of alive patients. About 60% of LTFU occurred within 1 year after cancer diagnosis. Compared to the reference group, logistic regression analyses indicated that patients LTFU were more likely to be female, Black, Asian/Pacific Islander (API), Hispanic, foreign born, insured by Medicaid, uninsured, aged <20 years, and living in New York City or metropolitan counties. Cases reported by laboratories only and physician offices also had a higher likelihood of LTFU. Similar patterns and effects were identified when evaluating 5-year LTFU.</p><p><strong>Conclusion: </strong>Identifying factors associated with patient LTFU is important for cancer registries to improve follow-up data. We found that LTFU is not random; rather, certain patient groups have higher LTFU rates than others. For registries that conduct follow-up through linkages, it is critical to collect high-quality and complete demographic data, especially for females, children, the foreign born, and minority race/ethnicity groups.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 4","pages":"161-169"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10229185/pdf/jrm-49-161.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9573231","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 Central Brain Tumor Registry of the United States Histopathological Grouping Scheme Provides Clinically Relevant Brain and Other Central Nervous System Categories for Cancer Registry Data.","authors":"Quinn Ostrom,&nbsp;Carol Kruchko,&nbsp;Corey Neff,&nbsp;Albert Firth,&nbsp;Recinda Sherman","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Brain and other central nervous system (CNS) tumors are a heterogenous collection of tumors, but they are generally reported in local and national cancer statistics as a single, large category. Although the collection of non-malignant brain and other CNS tumors has been mandated since diagnosis year 2004, these tumors are often excluded from standard statistical reports on cancer despite their burden on populations in the United States and Canada. The Central Brain Tumor Registry of the United States (CBTRUS) historical and current histopathological grouping schemes have been developed in collaboration with neuropathologists to capture the diversity of these tumors in clinically relevant categories. The goal of this analysis was to test a new recode variable based on the CBTRUS histopathology grouping prior to releasing the variable for use in the North American Association of Central Cancer Registries (NAACCR) Cancer in North American (CiNA) data sets and by individual cancer registries.</p><p><strong>Methods: </strong>The CBTRUS histopathology grouping scheme variable was created and implemented in an evaluation CiNA data set. The accuracy of the variable's categories was evaluated. Counts and incidence rates were calculated using SEER*Stat.</p><p><strong>Results: </strong>Overall, 481,650 cases of brain and other CNS tumors meeting the CBTRUS definition were identified for diagnosis years 2015-2019 in the CiNA data set for the US and Canada, making these the sixth-most-common tumor as a group. Of the brain and other CNS tumor cases, approximately 29% were malignant (behavior code /3 in the <i>International Classification of Diseases for Oncology,</i> 3rd edition [ICD-O-3]) while about 71% were nonmalignant (ICD-O-3 behavior code /0 or /1). The overall age-adjusted annual incidence rate (AAAIR) of brain and other CNS tumors was 24.44 per 100,000 (95% CI, 24.37-24.51). The most common histopathologies were meningioma, of which approximately 99% were nonmalignant (AAAIR, 9.09 per 100,000; 95% CI, 9.05-9.13); tumors of the pituitary, of which about 99% were nonmalignant (AAAIR, 4.28 per 100,000; 95% CI, 4.25-4.31); and glioblastoma, of which 100% were malignant behavior (AAAIR, 3.20 per 100,000; 95% CI, 3.18-3.22).</p><p><strong>Conclusion: </strong>Brain and other CNS tumors make up an extremely diverse category that contributes substantially to the cancer burden in North America. The CBTRUS histopathology grouping variable provides clinically relevant groupings for analysis of these tumors in the NAACCR CiNA as well as by individual central cancer registry groups. We encourage the use of this variable to support more detailed analysis of this important group of tumors.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 4","pages":"139-152"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10229189/pdf/jrm-49-139.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9573235","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":"Recinda Sherman","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 4","pages":"108"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10229184/pdf/jrm-49-108.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9577336","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":"Early COVID-19 Hospitalizations Among New York State Residents with a History of Invasive Cancer.","authors":"Xiuling Zhang,&nbsp;Margaret Gates Kuliszewski,&nbsp;Amy R Kahn,&nbsp;Maria J Schymura","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Individuals with a history of cancer may be more susceptible to severe COVID-19 due to immunosuppression, comorbidities, or ongoing treatment. We linked inpatient claims data on COVID-19 hospitalizations to cancer diagnoses from the New York State Cancer Registry (NYSCR) to examine associations between prior cancer diagnoses and hospitalizations for COVID-19, and factors associated with death at discharge after COVID-19 hospitalization.</p><p><strong>Methods: </strong>New York State (NYS) residents diagnosed with invasive cancer before July 1, 2021, who were alive on January 1, 2020, were identified from NYSCR data. We obtained claims data for discharge year 2020 and the first half of 2021 from NYS's Statewide Planning and Research Cooperative System (SPARCS), and we linked inpatient records with COVID-19 as the primary diagnosis to cancer data from the NYSCR using deterministic matching methods. We calculated descriptive statistics and conducted multivariable-adjusted logistic regression analyses to examine associations of cancer case characteristics with COVID-19 hospitalization and with vital status at discharge among patients with a history of cancer. All analyses were conducted in SAS 9.4.</p><p><strong>Results: </strong>Our analysis included 1,257,377 individuals with a history of cancer, 10,210 of whom had a subsequent primary COVID-19 hospitalization. Individuals with a history of cancer were 16% more likely to be hospitalized with COVID-19, compared to the general population of NYS, after adjusting for age and sex (95% CI, 14%-19%). Factors independently associated with COVID-19 hospitalization among cancer patients included older age, male sex, non-Hispanic Black race or Hispanic ethnicity, diagnosis with late-stage cancer or with multiple tumors, more recent cancer diagnosis, and New York City (NYC) residency at the time of cancer diagnosis. Factors independently associated with death at discharge among individuals with COVID-19 hospitalization and a prior cancer diagnosis included older age, male sex, non-Hispanic Black or non-Hispanic Asian/Pacific Islander race or Hispanic ethnicity, residence in NYC at the time of COVID-19 hospitalization, and an active cancer diagnosis claim code at the time of COVID-19 hospitalization.</p><p><strong>Conclusion: </strong>This claims-based study identified higher risks of COVID-19 hospitalization and death at discharge among individuals with a history of cancer, and particularly those in certain demographic and diagnostic groups.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 4","pages":"114-125"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10229194/pdf/jrm-49-114.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9611359","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 2022: 2022 NCRA Annual Education Conference Posters.","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 role of cancer registry software in supporting research and data collection <i>Learning from our Children: Adapting Data Management in an Adult World</i><i>Building a Melanoma Research Registry Within a Cancer Reporting Software</i>Describe how data can be used to identify the need for cancer genetic services and interventions in target populations <i>Mapping Cancer Incidence among Hereditary Cancer Types in Michigan, 2014-2018</i>Understand the importance of studies and evaluations for quality control at the local and national levels. <i>Casefinding: Beyond Path Reports</i><i>Results of Year 2 Data Quality Evaluation of CDC's National Program of Cancer Registries: Weighing the Evidence, Identifying Research Gaps, and Evaluating Outputs of a Prevention Research Agenda</i>.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 2","pages":"81"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198403/pdf/jrm-49-81.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9611362","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}