Below the Belt Award

Upper tract urothelial carcinoma (UTUC) is a rare cancer of the lining of the kidneys and ureter. Whilst UTUC is similar to bladder cancer it is often more advanced at diagnosis, more challenging to treat and more likely to cause death. Diagnosis requires a combination of laboratory tests, imaging and endoscopic procedures. Treatments are based on cancer stage and presence of metastasis. Treatment ranges from surgical removal of the kidney and ureter, for those in whom cure is attainable, to palliative treatments where cure is not possible. Due to the small number of people diagnosed with UTUC it is challenging to study individual treatments and outcomes in large trials. Often patients diagnosed with UTUC have multiple medical comorbidities and are excluded from trials, which makes results difficult to extrapolate to these groups. Whilst some data is collected in generic government cancer registries it is too limited to be of specific clinical use. There is also little known about the compliance with international guidelines to ensure that Australian patients are receiving the highest level of care regarding their UTUC. We propose an Australian UTUC registry to assess the patterns of care in Australia. We aim to enrol patients after their diagnosis of UTUC. The ways in which patients present, undergo investigation, treatment and follow-up will be recorded and analysed. By analysing the complete journey of patients diagnosed with UTUC we aim to identify areas of improvement and provide feedback to clinicians to ensure the best possible outcomes. A comparison of individual treatments and their outcomes will also aim to provide some clarity around treatment decisions. We will combine this database with the previously created bladder cancer cystectomy database (ACCEPT) to ensure that all urothelial cancers are covered by this multicentre registry.