Journal of registry management最新文献

{"title":"Planning for the Future.","authors":"April Fritz","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>[EDITOR's NOTE: The following is being provided to you by NCRA for the sole purpose of convenience. NCRA is not the author of the underlying information in the article and expressly disclaims any responsibility or liability arising from or caused by errors or omissions therein. Visit the provided sources for additional referencing.].</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 1","pages":"49-51"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11178114/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141332111","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":"Key Performance Indicator Dashboards.","authors":"Joseph Ramaswami","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 2","pages":"89-90"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11343433/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142056850","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 Power of Networking.","authors":"Keri Miller, Breana Norton, Cheryl Radin-Norman, Jeremy Laws, Renee Corvalan, Stacy Barr","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>This paper explores the critical role of networking, particularly within the oncology data specialist community, in developing and implementing an educational course. Networking, both within and beyond academia, is essential for gathering resources, expertise, and support necessary for designing and delivering an effective curriculum tailored to the demands of oncology data analysis. Networking within this specialized community facilitates collaboration with other educators and professionals, sharing of best practices, innovative teaching methodologies, and assessment strategies specific to oncology data analysis. This paper examines how networking within the oncology data specialist community contributed to the creation of a dynamic and comprehensive course, ultimately enriching the educational experience and preparing students for success.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 1","pages":"52-54"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11178109/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141332925","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 Use of Registries in Trauma.","authors":"","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 1","pages":"19-20"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11178117/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141332926","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":"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":"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}