Journal of registry management最新文献

{"title":"Reducing Morbidity and Mortality for Washington State Residents Impacted by Heritable Cancer Syndromes (HBOC and LS) by Enhancing Public Health Surveillance and Increasing Appropriate Referrals for Genetic Services.","authors":"Mahesh Keitheri Cheteri, Nirupama Shridhar, Philip Crain, Johna Peterson, Patti Migliore Santiago","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 1","pages":"43-44"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198411/pdf/jrm-49-43.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9575907","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":"Leah Kiesow","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 1","pages":"3"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198407/pdf/jrm-49-3.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9575916","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":"Racial/Ethnic Disparities in COVID-19 Infection Among Working-Age Women with Precancerous Cervical Lesion.","authors":"Mei-Chin Hsieh, Tina Lefante, Yong Yi, Xiao-Cheng Wu","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 4","pages":"196-197"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10229188/pdf/jrm-49-196.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9577338","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":"Data Quality Control for Electronic Pathology Reporting.","authors":"Qianru Wu, Connie Ganz, Lifeng Li","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 3","pages":"95-96"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198416/pdf/jrm-49-95.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9949844","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":"Benefits and Challenges of a Peer-Reviewed Approach to Meeting CoC Standard 6.1: Cancer Registry Quality Control.","authors":"Rosann Keller, Afreen Siddiqui","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 2","pages":"64-65"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198429/pdf/jrm-49-64.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9949848","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":"Demystifying the RCRS Guidelines for Breast BCSRT Measure.","authors":"Gina McNellis, Heather Fuller","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 2","pages":"56-57"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198414/pdf/jrm-49-56.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9589879","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 Case of the Missing 2020 Cancers: Using Claims Data to Investigate a Deficit in Incident Cancer Case Reports to the New York State Cancer Registry in 2020.","authors":"Xiuling Zhang,&nbsp;Margaret Gates Kuliszewski,&nbsp;Amy R Kahn,&nbsp;Maria J Schymura","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>As the February 2022 Surveillance, Epidemiology, and End Results (SEER) Call for Data deadlines approached, the New York State Cancer Registry had received reports for approximately 10% fewer consolidated incident cases for 2020 than expected. We used claims data to examine changes in the volume of cancer claim records during the COVID-19 pandemic and possible contributors to the deficit in cancer reports.</p><p><strong>Methods: </strong>The New York State (NYS) Statewide Planning and Research Cooperative System (SPARCS) requires reporting of all patient encounters from licensed ambulatory surgery, emergency department, and hospital inpatient and outpatient providers. Each record includes patient demographics and up to 17 diagnosis codes from the <i>International Classification of Diseases, Tenth Revision, Clinical Modification</i> (ICD-10-CM). For this project, we extracted 6,725,416 SPARCS records with any malignant neoplasm code for 2018 through June 2021 for NYS residents. Using SAS 9.4, we focused on comparing the cancer-related records for 2020 to the records from 2019.</p><p><strong>Results: </strong>Overall, there were 5% more cancer-related records in 2019 than in 2018 (2,009,600 vs 1,914,364), but 8.2% fewer records in 2020 (1,844,054 total) than in 2019. Looking by month and year, the number of claims in the first 2 months of 2020 exceeded the numbers from 2019 by 5%. However, a decrease in the number of claims started in March 2020, with the biggest drop in April 2020, where there was a deficit of 38.8% for cancer-related encounter reports relative to the same month the previous year. Although the numbers rose after April, the number of claims for the last half of 2020 was still 4% lower than the same time frame in 2019. There were substantial decreases in the number of records in 2020 for all encounter types and across levels of each covariate examined, including age, sex, race/ethnicity, and facility region of NYS. In analyses of all reporting facilities, facilities in New York City had a more pronounced and more prolonged drop in reporting in 2020 than facilities in the rest of the state.</p><p><strong>Conclusion: </strong>Although SPARCS data do not provide definitive evidence of decreases in incident cancer diagnoses, these data suggest that there were fewer cancers diagnosed among NYS residents in 2020. Additional analyses are needed to assess the impacts of COVID-19-related delays in cancer diagnosis and treatment on stage at diagnosis and outcomes.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 4","pages":"170-176"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10229191/pdf/jrm-49-170.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9611361","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":"Responding to Constituent Cancer Concerns: The Maine Cancer Registry's Cancer Inquiry Group.","authors":"Carolyn Bancroft,&nbsp;Kim Haggan,&nbsp;Kathy Boris,&nbsp;Jessica Cross,&nbsp;Sara Huston,&nbsp;Denise Yob","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 3","pages":"92-93"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198397/pdf/jrm-49-92.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9949849","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":"COVID-19 Response to Cancer Conference.","authors":"Cheryl Sheridan","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 2","pages":"62-63"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198390/pdf/jrm-49-62.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9949855","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 Merkel Cell Carcinoma Patient Registry: From Promise to Prototype to Patient.","authors":"David M Miller,&nbsp;Sophia Z Shalhout,&nbsp;Farees Saqlain,&nbsp;Vishal A Patel,&nbsp;Kenneth Y Tsai,&nbsp;Ravikumar Komandur Elayavilli,&nbsp;Bill Louv,&nbsp;Isaac Brownell,&nbsp;Michael K Wong","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The Merkel Cell Carcinoma (MCC) Patient Registry is a national multi-institutional collaborative effort that will prospectively follow and record outcomes and events in MCC patients. MCC is the prototypical rare tumor, and this Registry will trail blaze new methodologies that will enable multiple investigators to examine real world outcome data in real time. Deliverables from the Registry include precise patient stratification into risk categories, identification of best practices, real-world data for drug development programs, revelations about optimal sequence and combinations therapies, uncovering low incidence toxicities, and the generation of novel testable hypotheses. Importantly, the Registry offers a way forward in the yet-unsolved dilemma of drug development for rare tumors, since the Registry's design will allow the creation of highly defined patient-level data that can be used as a robust comparator for single arm phase I and II clinical trials. The MCC Task Force comprises members from academic medical centers, the drug industry, the National Institutes of Health, and the US Food and Drug Administration. Project Data Sphere, LLC provides a secure, open-access data sharing platform and comprehensive support to optimize research performance and ensure rigorous and timely results. The Registry is currently in development and is based on a REDCap database integrated into the host institution's electronic medical record. We plan to have the first patient accessioned on Project Data Sphere's data platform in the second quarter of 2022. Members of the MCC Registry Task Force represent a joint effort of research and clinical investigators from academia, industry and regulatory science to develop the first publicly held MCC registry on Project Data Sphere's open-access data platform. Our hope is that this shared repository will allow investigators to identify new approaches, improve treatment outcomes, shorten the time from discovery to implementation and, ultimately, improve patient lives.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"49 1","pages":"4-9"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10198422/pdf/jrm-49-4.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9571257","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}