Blood Cancer Network Ireland (BCNI) and National Cancer Registry Ireland (NCRI) collaboration: challenges and utility of an Enhanced Blood Cancer Outcomes Registry (EBCOR) pilot.
Seán R Millar, Mohamed Bakri Mohamed, Vitaliy Mykytiv, Rose McMorrow, Conan Donnelly, Eamonn O'Leary, Nina Orfali, Philip Murphy, Paul V Browne, John Quinn, Peter O'Gorman, Mary F Ryan, Ruth Clifford, Ezzat El Hassadi, Derville O'Shea, Oonagh Gilligan, Janusz Krawczyk, Michael E O'Dwyer, Eva Szegezdi, Mary R Cahill
{"title":"Blood Cancer Network Ireland (BCNI) and National Cancer Registry Ireland (NCRI) collaboration: challenges and utility of an Enhanced Blood Cancer Outcomes Registry (EBCOR) pilot.","authors":"Seán R Millar, Mohamed Bakri Mohamed, Vitaliy Mykytiv, Rose McMorrow, Conan Donnelly, Eamonn O'Leary, Nina Orfali, Philip Murphy, Paul V Browne, John Quinn, Peter O'Gorman, Mary F Ryan, Ruth Clifford, Ezzat El Hassadi, Derville O'Shea, Oonagh Gilligan, Janusz Krawczyk, Michael E O'Dwyer, Eva Szegezdi, Mary R Cahill","doi":"10.1007/s11845-024-03756-9","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>The Blood Cancer Network Ireland and National Cancer Registry Ireland worked to create an Enhanced Blood Cancer Outcomes Registry (EBCOR). Enhanced data in acute myeloid leukaemia (AML) included an extensive data dictionary, bespoke software and longitudinal follow-up.</p><p><strong>Aims: </strong>To demonstrate the utility of the database, we applied the data to examine a clinically relevant question: Charlson comorbidity index (CCI) usefulness in predicting AML patients' survival.</p><p><strong>Methods: </strong>A software designer and consultant haematologists in Cork University Hospital worked together to standardise a data dictionary, train registrars and populate a database. One hundred and forty-one AML patients underwent enhanced data registration. Comorbidities identified by chart review were used to examine the capability of the CCI and age at diagnosis to predict mortality using Kaplan-Meier curves, Cox regression and receiver operating characteristic curves.</p><p><strong>Results: </strong>In regression analysis, a dose-response relationship was observed; patients in the highest CCI tertile displayed a greater risk (HR = 4.90; 95% CI 2.79-8.63) of mortality compared to subjects in tertile 2 (HR = 2.74; 95% CI 1.64-4.57) and tertile 1 (reference). This relationship was attenuated in an analysis which adjusted for age at diagnosis. The area under the curve (AUC) for the CCI was 0.76 (95% CI 0.68-0.84) while the AUC for age at diagnosis was 0.84 (95% CI 0.78-0.90).</p><p><strong>Conclusions: </strong>Results suggest that the CCI provides no additional prognostic information beyond that obtained from age alone at AML diagnosis and that an EBCOR can provide a rich database for cancer outcomes research, including predictive models and resource allocation.</p>","PeriodicalId":14507,"journal":{"name":"Irish Journal of Medical Science","volume":" ","pages":"2615-2623"},"PeriodicalIF":1.7000,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11666745/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Irish Journal of Medical Science","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s11845-024-03756-9","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/7/20 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"MEDICINE, GENERAL & INTERNAL","Score":null,"Total":0}
引用次数: 0
Abstract
Background: The Blood Cancer Network Ireland and National Cancer Registry Ireland worked to create an Enhanced Blood Cancer Outcomes Registry (EBCOR). Enhanced data in acute myeloid leukaemia (AML) included an extensive data dictionary, bespoke software and longitudinal follow-up.
Aims: To demonstrate the utility of the database, we applied the data to examine a clinically relevant question: Charlson comorbidity index (CCI) usefulness in predicting AML patients' survival.
Methods: A software designer and consultant haematologists in Cork University Hospital worked together to standardise a data dictionary, train registrars and populate a database. One hundred and forty-one AML patients underwent enhanced data registration. Comorbidities identified by chart review were used to examine the capability of the CCI and age at diagnosis to predict mortality using Kaplan-Meier curves, Cox regression and receiver operating characteristic curves.
Results: In regression analysis, a dose-response relationship was observed; patients in the highest CCI tertile displayed a greater risk (HR = 4.90; 95% CI 2.79-8.63) of mortality compared to subjects in tertile 2 (HR = 2.74; 95% CI 1.64-4.57) and tertile 1 (reference). This relationship was attenuated in an analysis which adjusted for age at diagnosis. The area under the curve (AUC) for the CCI was 0.76 (95% CI 0.68-0.84) while the AUC for age at diagnosis was 0.84 (95% CI 0.78-0.90).
Conclusions: Results suggest that the CCI provides no additional prognostic information beyond that obtained from age alone at AML diagnosis and that an EBCOR can provide a rich database for cancer outcomes research, including predictive models and resource allocation.
背景：爱尔兰血液癌症网络（Blood Cancer Network Ireland）和爱尔兰国家癌症登记处（National Cancer Registry Ireland）共同创建了一个增强型血液癌症结果登记处（EBCOR）。急性髓性白血病（AML）的增强数据包括一个广泛的数据字典、定制软件和纵向随访。目的：为了证明该数据库的实用性，我们将数据用于研究一个临床相关问题：目的：为了证明数据库的实用性，我们应用数据研究了一个与临床相关的问题：夏尔森合并症指数（CCI）在预测急性髓细胞白血病患者生存率方面的作用：方法：科克大学医院的一名软件设计师和血液学顾问共同合作，规范数据字典、培训登记员并填充数据库。141名急性髓细胞白血病患者接受了强化数据登记。利用Kaplan-Meier曲线、Cox回归和接收者操作特征曲线，通过病历审查确定合并症，以检验CCI和诊断年龄预测死亡率的能力：在回归分析中，观察到了一种剂量-反应关系；CCI最高的三等分患者的死亡风险（HR = 4.90；95% CI 2.79-8.63）高于二等分（HR = 2.74；95% CI 1.64-4.57）和一等分（参考）的患者。在对诊断时的年龄进行调整后，这种关系有所减弱。CCI的曲线下面积（AUC）为0.76（95% CI 0.68-0.84），而诊断时年龄的AUC为0.84（95% CI 0.78-0.90）：结果表明，CCI 并不能提供比单纯从急性髓细胞性白血病诊断时的年龄所获得的预后信息更多的信息，而 EBCOR 可以为癌症预后研究（包括预测模型和资源分配）提供丰富的数据库。
期刊介绍：
The Irish Journal of Medical Science is the official organ of the Royal Academy of Medicine in Ireland. Established in 1832, this quarterly journal is a contribution to medical science and an ideal forum for the younger medical/scientific professional to enter world literature and an ideal launching platform now, as in the past, for many a young research worker.
The primary role of both the Academy and IJMS is that of providing a forum for the exchange of scientific information and to promote academic discussion, so essential to scientific progress.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
