{"title":"Using Registry Data for Action in Virginia's Updated Cancer Plan.","authors":"Dane De Silva, Erin Austin","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 3","pages":"125"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11781286/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143081424","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":"Interfacing with CDC Guidelines for Unusual Patterns of Cancer and Environmental Concerns: A 2023 Wisconsin Case Study.","authors":"Lena Swander, Jeffrey Bond, Jessica Link Reeve","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"51 4","pages":"173-174"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11917985/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664957","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}
Arelis Hernandez, Victoria Sweeney, Amelia Deitsch, Katherine Levie, Lori Boice, Kimberlie Lloyd, Jessica Martin, Marianna Wicks, Louise Widmer
{"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}
Maria Leuchert, Alfreda Woods, Claudine Samanic, Ian Quan
{"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}
Frances B Maguire, Brenda M Hofer, Arti Parikh-Patel, Theresa H M Keegan
{"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}