Set-up and preliminary results from the Patient-overview Prostate Cancer. Longitudinal registration of treatment of advanced prostate cancer in the National Prostate Cancer Register of Sweden

Introduction: Novel drugs have been shown to prolong life in men with metastatic prostate cancer (PCa) and castration resistant Pca (CRPC). The aim of Patient-overview Prostate cancer (PPC) is to register and report these treatments and their effect. Material and methods: In PPC, a new part of the National Prostate Cancer Register of Sweden data on start and stop of treatments, imaging, prostate specific antigen, clinical assessment of progression and patient reported outcome measures (PROM) are registered from initiation of hormonal treatment. Data are displayed in a graph to inform clinical decisions for individual patients. For research, data in PPC are linked to PCBaSe with information from NPCR and a number of health care registers. Results: In December 2019, 7 882 men had been registered in PPC out of whom 3 912 had reached the CRPC state. Median time to start of androgen receptor targeted drugs (ART) from start of ADT was 4 years (interquartile range IQR 6) for men with primary ADT, and 9 years (IQR 6) and for men with secondary ADT. Out of all men in PCBaSe with a prescription for ART in 2016-2017, PPC captured 1 480/4 055 (36%). There were small differences between men registered/not registered in PPC for cancer characteristics, primary treatment, comorbidity, and time on ADT before start of ART. Conclusion: In PPC, use and effects of novel therapies for advanced Pca are assessed in a real-life setting. PPC data are used as a decision aid, for quality assurance, and in research.