RESUMO
BACKGROUND: Lung cancer is a major health burden in Austria; however, limited real-world data exist on the diagnostic and treatment reality of lung cancer patients in Austria. The collection of high-quality data in a clinical setting is needed to gain insights into the real-world diagnostic and therapeutic management of lung cancer patients. METHODS: The Karl Landsteiner Institute for Lung Research and Pulmonary Oncology implemented the Landsteiner lung cancer research platform (LALUCA), recruiting unselected lung cancer patients from two high volume centers in Vienna. This article describes the objectives, design, methodology of the registry and the process of implementation. RESULTS: A multidisciplinary team of lung cancer specialists created a custom designed variable catalogue for the LALUCA platform consisting of 17 categories with 180 variables. Detailed information on clinical characteristics, diagnostic interventions, molecular pathology as well as curative and palliative treatment modalities are collected. During an implementation phase in 2020, the platform was optimized using the data of 50 patients. Since then a total of 1200 patients have been enrolled. Recruitment for the registry is ongoing with a recruitment rate of approximately 400 patients per year. CONCLUSION: The LALUCA registry is a web-based platform for the collection of real-world clinical data of lung cancer patients. Combining a large number of patients with a focus on gathering comprehensive data on diagnosis and treatment, the LALUCA registry provides a tool for investigation, evaluation, and improvement of the clinical management, survival and quality of care of Austrian lung cancer patients.
