Cohort profile: the Alberta Prostate Cancer Research Initiative (APCaRI) Registry and Biorepository facilitates technology translation to the clinic through the use of linked, longitudinal clinical and patient-reported data and biospecimens from men in Alberta, Canada.

PURPOSE: The Alberta Prostate Cancer Research Initiative (APCaRI) Registry and Biorepository was established in 2014 by the APCaRI to facilitate the collection of clinical and patient-reported data, biospecimen, to measure prostate cancer outcomes and to support the development and clinical translation of innovative technologies to better diagnose and predict outcomes for patients with prostate cancer. PARTICIPANTS: Men suspected with prostate cancer and referred to Urology centres in Alberta were enrolled in the APCaRI 01 study, while men with a prior prostate cancer diagnosis participated in the APCaRI 03 study from 1 July 2014 to 30 June 2019. The APCaRI Registry and Biorepository links biospecimens and data from a wide representation of patients drawn from an Alberta population of more than 4 million. FINDINGS TO DATE: From 1 July 2014 to 30 June 2019, total APCaRI 01 and 03 study recruitment was 3754 men; 142 (4%) of these men withdrew in full, 65 men (2%) withdrew biospecimens and 123 men (3%) died of any cause. Over this same time, 8677 patient-reported outcome measure (PROM) surveys and 7368 biospecimens were collected and are available from the registry and biorepository, respectively. The data entry error rate was 0.8% and 0.95% for critical and non-critical values, respectively, and 1.8% for patient-reported surveys. FUTURE PLANS: The APCaRI Registry and Biorepository will collect longitudinal data and PROM surveys until 2024, patient outcomes up to 25 years after recruitment and biospecimen storage for up to 25 years. The APCaRI cohorts will continue to provide data and samples to researchers conducting retrospective studies. The richness of the data and biospecimens will complement many different research questions, ultimately to improve the quality of care for men with prostate cancer.

PROSPeCT: A Predictive Research Online System for Prostate Cancer Tasks.

PURPOSE: An online clinical information system, called Predictive Research Online System Prostate Cancer Tasks (PROSPeCT), was developed to enable users to query the Alberta Prostate Cancer Registry database hosted by the Alberta Prostate Cancer Research Initiative. To deliver high-quality patient treatment, prostate cancer clinicians and researchers require a user-friendly system that offers an easy and efficient way to obtain relevant and accurate information about patients from a robust and expanding database. METHODS: PROSPeCT was designed and implemented to make it easy for users to query the prostate cancer patient database by creating, saving, and reusing simple and complex definitions. We describe its intuitive nature by exemplifying the creation and use of a complex definition to identify a "high-risk" patient cohort. RESULTS: PROSPeCT was made to minimize user error and to maximize efficiency without requiring the user to have programming skills. Thus, it provides tools that allow both novice and expert users to easily identify patient cohorts, manage individual patient care, perform Kaplan Meier estimates, plot aggregate PSA views, compute PSA-doubling time, and visualize results. CONCLUSION: This report provides an overview of PROSPeCT, a system that helps clinicians to identify appropriate patient treatments and researchers to develop prostate cancer hypotheses, with the overarching goal of improving the quality of life of patients with prostate cancer. We have made available the code for the PROSPeCT implementation at https://github.com/max-uhlich/e-PROSPeCT .