Blood Cancer Network Ireland (BCNI) and National Cancer Registry Ireland (NCRI) collaboration: challenges and utility of an Enhanced Blood Cancer Outcomes Registry (EBCOR) pilot

摘要: BackgroundThe 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.AimsTo 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.MethodsA 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 …