Cabrini Research Annual Report 2020-21
Dr Stefanie Elbracht-Leong DATA MANAGER, LUNG CANCER REGISTRY
Dr Stefanie Elbracht-Leong studied physics in her home country, Germany, at the Karlsruhe University. Stefanie was awarded a Master’s degree working on A Toroidal LCH ApparatuS (ATLAS) and the Compact Muon Solenoid (CMS) experiments at the Large Hadron Collider (LHC) in Switzerland. The research component of her work was performed in collaboration with the Experimental Particle Physics team at the University of Melbourne. At the completion of her Masters, she moved to Australia and completed a PhD at the University of Melbourne. The focus of her thesis was the development and improvement of a new next generation state of-theart X-ray imaging detector. Stefanie’s studies were done in collaboration with the Paul-Scherrer Institute in Villigen, Switzerland. During her time as a PhD student, Stefanie discovered her interest for large datasets and the research that can be performed thanks to complete, accurate and findable datasets. In her first postdoctoral role, Stefanie joined Australian Genomics, a National Health and Medical Research Council (NHMRC) funded project on genomics research in rare diseases and cancers administered by the Murdoch Children’s Research Institute (MCRI). Stefanie’s role at MCRI was the data coordinator and governance officer. As part of her responsibilities she oversaw the implementation and compliance of data governance policies related to the 18 flagship studies. Originally starting in data management on her own, her increased duties and role led to her taking on leadership of a team of data officers to cope with the increasing demands and workflow. This role allowed her to gain knowledge on genomics research and further develop her data governance literacy, while using her extensive data management skills. At the start of 2021, Stefanie joined Cabrini Research as the data manager for the lung cancer registry. Thanks to this role, she hopes to be able to balance an interesting and growing career in data management and health informatics with the demands of a young family. Using
106
the skills she has developed during her research career, she aims to build a comprehensive lung cancer registry that will help improve the quality of care and outcomes for patients treated at Cabrini, as well as help improve the current challenges of lung cancer management and research on a wider scale. The database is currently being developed in REDCap and will be used to capture clinical data and patient experience data through patient-reported outcomes measures (PROMs), from diagnosis, during treatment and through to follow-up. Patient data collected will include but is not limited to demographics, histopathology and genomic analysis, stage of disease, exposure history, treatments, and survival. Data will be obtained from prospective patients diagnosed with lung cancer being treated at both Cabrini Malvern and Brighton sites. Data will be extracted from their treating physician rooms, medical records, clinical systems (PAS and CHARM), multi-disciplinary team meetings, and hospital coded data that applies financial costs to diseases, health related problems and procedures performed (ICD10 coded extracts). Stefanie is also working collaboratively with the Victorian Lung Cancer Registry (VLCR) and the newly established Investigation of Health outcomes in Australian Lung cancEr (INHALE) registry. At the core of Stefanie’s work ethic and beliefs, is a drive to continuously learn and use this ever growing knowledge to advance medical informatics and ultimately improve the quality of care of patients suffering the burden of cancers or rare diseases. Efficient, thorough and timely collection of high quality real world data and processes as well as multi-disciplinary collaboration are crucial to the improvement of patients healthcare. Stefanie is passionate about contributing back to the community with her work and is very much looking forward to contributing to the work and future of Cabrini Research.
