Journal of registry management最新文献

{"title":"Survey of Satisfaction and Utility of an Application to Find Inconsistencies in Trauma Registry Data.","authors":"Jacob W Roden-Foreman","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Introduction: </strong>Data quality is essential for trauma registries, but few tools have been developed to maximize it. The author's center created a new application to automatically identify >500 logic errors in registry data and produce individualized data quality reports for staff. Objective metrics indicated the application is effective, but staff perceptions were unknown. The aim of this project was to assess registry staff satisfaction with and perceived usefulness of the new application.</p><p><strong>Methods: </strong>Anonymous cross-sectional online survey with 5-point Likert scales and free-text responses.</p><p><strong>Results: </strong>Of 10 eligible staff members who use the new application, 8 responded to the survey. Confidence in data accuracy before the new application was generally low but unanimously higher after implementation (8/8; 95% CI, 5/8-8/8). Respondents found the application at least somewhat helpful overall (6/6; 95% CI, 3/6-6/6; 2 nonresponses), with 5/6 finding it very helpful. Respondents were at least somewhat satisfied with the new application (8/8; 95% CI, 5/8-8/8), with 4/8 being very satisfied. There was minimal negative feedback other than the new process being initially overwhelming.</p><p><strong>Conclusions: </strong>Respondents found the new application to be beneficial in several ways, including indirectly. Additional research is needed to be able to generalize these single center findings and determine best practices for data validation, but software-based approaches to augment more common data validation processes may be a beneficial and welcomed job aid for registry staff.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 2","pages":"75-79"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11343437/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142056856","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 Importance of Training and Assessing Quality Control Reviewers in Technology-Enabled Abstraction of Real-World Data: A Case Study.","authors":"Arelis Hernandez, Victoria Sweeney, Amelia Deitsch, Katherine Levie, Lori Boice, Kimberlie Lloyd, Jessica Martin, Marianna Wicks, Louise Widmer","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Accurate cancer registry data is crucial for understanding cancer prevention and treatment strategies. Proper education and training are key for successful quality control (QC) programs and an evaluation process is needed to assess effectiveness. Syapse developed a rigorous QC training program that includes a peer review process to assess data quality and an interrater review (IRR) program to evaluate the consistency of QC reviewers. In reviewing IRR cases, we found high rates of agreement in various cancer types: colon (97.74%), prostate (97.75%), ovarian (96.31%), lung (98.03%), breast (97.86%), and bladder (97.88%). A peer review experience questionnaire was also administered. Results indicated that the program facilitated the acquisition of new skills. Through the implementation of robust QC training and assessment procedures for technology-enabled data curation, our Oncology Data Specialist (ODS)-certified professionals at Syapse ensure data quality in a real-world evidence (RWE) platform. QC reviewers deserve an extensive investment in training and professional development to uphold data quality and support cancer research efforts.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 2","pages":"81-86"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11343427/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142056857","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":"Enhancing Cancer Registry Data Quality Through Visual Case Reviews.","authors":"Maria Leuchert, Alfreda Woods, Claudine Samanic, Ian Quan","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 2","pages":"95-96"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11343426/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142056849","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-WINTER 2024: AN EXAMINATION OF LIVER CANCER INCIDENCE IN CALIFORNIA.","authors":"Frances B Maguire, Brenda M Hofer, Arti Parikh-Patel, Theresa H M Keegan","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>This quiz is derived from the article, \"<i>An examination of liver cancer incidence in California</i>\" by Fran Maguire, PhD and co-authors. <b>After reading the article and completing the quiz, participants will be able to:</b> Identify the trends in the 2 main types of liver cancerDescribe demographic patterns of liver cancer trends.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 4","pages":"180"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11917978/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664942","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":"Disparities in Colorectal Cancer Incidence and Mortality Rates in Arkansas and Associated Risk Factors.","authors":"Daniela Ramirez Aguilar, Johnna Berryhill, Melody Greer, Jennifer Gan-Kemp, Sudeepa Bhattacharyya","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Colorectal cancer (CRC) is a common malignancy in the United States, ranking as the third-leading cause of cancer-related deaths. Early detection is crucial for prognosis, treatment, and survival, yet disparities persist in CRC outcomes based on age, sex, race, and geography. In Arkansas, a significant proportion of CRC cases are diagnosed at a late stage, with notable disparities observed among different demographic groups. In this study, we utilized data from the Arkansas Central Cancer Registry (ACCR) and the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) program to analyze CRC incidence and mortality rates in Arkansas and examine the associated disparities and risk factors. Data were stratified by sex, race, age, geographic area, and stage at diagnosis. Temporal trends and age-adjusted rates were computed using SEER*Stat software, and a bootstrapped logistic regression model was developed to identify predictors of late-stage CRC diagnosis. The analysis revealed that men had higher CRC mortality and incidence rates compared to women, with a mortality rate ratio (MRR) of 1.47 and an incidence rate ratio (IRR) of 1.35. Black individuals exhibited higher CRC mortality and incidence rates than their White counterparts (MRR, 1.46; IRR, 1.29). Late-stage CRC diagnosis was more common among men and individuals of Black race. Temporal trends showed a decline in CRC incidence from 2001 to 2011, followed by an increase from 2011 to 2019. Individuals aged 18-49 years experienced a significant rise in CRC incidence, highlighting an emerging concern for early-onset CRC. Geographic analysis indicated higher CRC incidence in rural vs urban areas. Overall, significant disparities in CRC outcomes were observed by sex, race, age, and geography. The increase in CRC incidence among younger adults underscores the need for targeted screening and early detection strategies. Geographic disparities highlight the necessity of improving health care access and screening services in rural areas.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 4","pages":"158-166"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11917984/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664953","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":"Ascertainment of Hepatitis B and C Infection from Linked Data Sources for Residents of New York City Diagnosed with Liver or Intrahepatic Bile Duct Cancer.","authors":"Margaret Gates Kuliszewski, Baozhen Qiao, Xiuling Zhang, Holly Anger, Maria J Schymura, Tabassum Insaf","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Chronic infection with hepatitis B or C substantially increases risk of hepatocellular carcinoma. However, central cancer registries do not routinely collect information on hepatitis diagnoses. We evaluated the extent to which information on hepatitis B or C diagnosis could be ascertained from linked external data sources for cancers reported to the New York State Cancer Registry.</p><p><strong>Methods: </strong>We linked data for 14,747 New York City (NYC) residents diagnosed with liver or intrahepatic bile duct cancer during 2004-2018 to 2 data sources: (1) the NYC Viral Hepatitis Surveillance Registry, which collects information on reported probable and confirmed cases of hepatitis B and C from New York laboratories and health care providers, and (2) the New York Statewide Planning and Research Cooperative System (SPARCS), which captures hepatitis diagnosis codes from hospital inpatient stays and outpatient encounters. We determined whether documentation of hepatitis B or C was present in 1 or both data sources, assessed concordance between the data sources, and used multivariable-adjusted logistic regression to examine factors associated with discordance in hepatitis positivity.</p><p><strong>Results: </strong>Of the 14,747 cancer cases included, 3,972 had documentation in either data source of hepatitis B (26.9%), 7,599 had documentation of hepatitis C (51.5%), and 9,753 had either diagnosis (66.1%). There was moderate to substantial agreement between the 2 data sources. The percent of NYC patients with any unrecorded hepatitis infection was 12.7% for the hepatitis registry and 7.8% for SPARCS, and discordance in hepatitis positivity was more common in certain individuals, including those aged ≥70 years at cancer diagnosis and those with intrahepatic bile duct cancer, Hispanic ethnicity (hepatitis registry only), and Black or Asian race (SPARCS only).</p><p><strong>Conclusions: </strong>These results indicate that hospital discharge and public health surveillance data can be used to assess individual-level hepatitis B and C infection status in people diagnosed with liver cancer. Possible reasons for discrepancies between the data sources include incomplete reporting in the hepatitis registry, especially for earlier diagnosis years, differing case inclusion criteria, and differences in the linkage methods for the 2 data sources. This information can be used to enrich cancer registry data for epidemiologic analyses of hepatocellular carcinoma and other cancers.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 4","pages":"146-157"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11917982/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664947","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":"Utilizing Residential History to Examine Heterogeneous Exposure Trajectories: A Latent Class Mixed Modeling Approach Applied to Mesothelioma Patients.","authors":"Bian Liu, Furrina F Lee","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Life-course exposure assessment, as opposed to a one-time snapshot assessment based on the address at cancer diagnosis, has become increasingly possible with available cancer patients' residential history data. To demonstrate a novel application of residential history data, we examined the heterogeneous trajectories of the nonasbestos air toxic exposures among mesothelioma patients, and compared the patients' residential locations with the spatiotemporal clusters estimated from the National Air Toxic Assessment (NATA) data.</p><p><strong>Methods: </strong>Patients' residential histories were obtained by linking mesothelioma cases diagnosed during 2011-2015 in the New York State (NYS) Cancer Registry to LexisNexis administrative data and inpatient claims data. To compare cancer risks over time, yearly relative exposure (RE) was calculated by dividing the NATA cancer risk at individual census tracts by the NYS average and subtracting 1. We used a latent class mixed model to identify distinct exposure trajectories among patients with a 15-year residential history prior to cancer diagnosis (n = 909). We further examined patient characteristics by the latent trajectory groups using bivariate comparisons and a logistic regression model. The spatiotemporal clusters of RE were generated based on all NATA data (n = 72,079) across the contiguous United States and using the SaTScan software.</p><p><strong>Results: </strong>The median number of addresses lived was 2 (IQR, 1-4), with a median residential duration of 8 years (IQR, 4.7-13.2 years). We identified 3 distinct exposure trajectories: <i>persistent low exposure</i> (27%), <i>decreased low exposure</i> (41%), and <i>increased high exposure</i> (32%). Patient characteristics did not differ across trajectory groups, except for race and Hispanic ethnicity (<i>P</i> < .0001) and residential duration (<i>P</i> = .03). Compared to their counterparts, non-Hispanic White patients had a significantly lower odds of belonging to the increased high exposure group (adjusted odds ratio, 0.14; 95% CI, 0.09-0.23) than the persistent low exposure and decreased low exposure groups. Patients in the increased high exposure group tended to reside in New York City (NYC), which was covered by one of the high-RE clusters. On the other hand, patients in the persistent low exposure group tended to reside outside of NYC within NYS, which was largely covered by 2 low-RE clusters.</p><p><strong>Conclusion: </strong>Using mesothelioma as an example, we quantified the heterogeneous trajectories of nonasbestos air toxic exposure based on patients' residential histories. We found that patients' race and ethnicity differed across the latent groups, likely reflecting the differences in patients' residential mobility before their cancer diagnoses. Our method can be used to study cancer types that do not have a clear etiology and may have a higher attributable risk due to environmental exposures as well as","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"144-154"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945925/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140176914","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 Challenges of Collecting Long-Term Outcomes in Cancer Patients on the Population-Level: The Case of Metastatic Breast Cancer.","authors":"Eileen Morgan, Colette O'Neill, Aude Bardot, Paul Walsh, Isabelle Soerjomataram, Melina Arnold","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 4","pages":"173-175"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10945923/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140176912","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":"Finding \"Zombies\" in Your Database by Confirming Vital Status.","authors":"David K O'Brien","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The Alaska Cancer Registry (ACR) conducted a study to identify and correct the vital status of certain cases in its database. These cases were reported as <i>deceased</i> by the original reporting health care facility but were not identified as being deceased using routine death resources. Cases incorrectly reported as deceased are referred to here as \"zombies,\" as they are the \"living dead\" in the registry database. Zombie cases are problematic as they contribute toward artificially high mortality rates and artificially low survival rates. They are the opposite of \"immortals,\" a term used in the literature to indicate cases that are alive in the registry database but are actually deceased. To start the study, ACR first linked its registry database to the state mortality database, the Social Security Death Index (SSDI), and the National Death Index (NDI). ACR has 3 non-North American Association of Central Cancer Registries (NAACCR) flag fields indicating the status of the linkage with these 3 data sources. ACR was able to identify zombie candidates by selecting deceased cases that did not successfully link with any of these 3 mortality data sources. After all 3 linkages were completed, ACR identified 20 zombie candidates out of 19,590 deceased cases. ACR researched these patients in several state-specific databases and found that 14 of them were true zombies and changed their vital status to <i>alive</i>. Of the remaining 6 deceased cases, 3 died out of country, 2 died in state, and 1 died out of state. ACR recommends that other state registries consider adding these 3 non-NAACCR mortality database flag fields, as they would make searching for zombie cases fairly routine. It would also serve as a way to perform a quality control check on deceased cases that accidentally become alive again after consolidation with a new facility source record.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 2","pages":"57-59"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414203/pdf/jrm-50-57.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9995765","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":"HPV-Related Cancer Incidence-Rates and Trends in Washington State.","authors":"Katie Treend,&nbsp;Mahesh Keitheri Cheteri,&nbsp;Patti Migliore Santiago,&nbsp;Sherylene Agcaoili","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"50 1","pages":"36-37"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10414205/pdf/jrm-50-36.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9990506","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}