Irish Prostate Cancer Outcomes Research (IPCOR) registry: cohort profile.

PURPOSE

To describe the Irish Prostate Cancer Outcomes Research (IPCOR) registry. The cohort was collected to inform and improve the prostate cancer journey of men in Ireland.

PARTICIPANTS

Established in 2015, IPCOR was a unique large-scale prospective cohort study registering men with prostate cancer in Ireland. From 2016 to 2020, IPCOR collected data on 6816 men who were newly diagnosed with prostate cancer across 16 hospitals, both public and private. A comprehensive clinical dataset was collected, capturing detailed information on men's diagnosis, treatments and follow-up. In addition, a subset of 873 men completed patient-reported outcome measures.

FINDINGS TO DATE

The IPCOR study has revealed several key insights into prostate cancer diagnosis and treatment in Ireland. The data indicate a high rate of diagnosis through opportunistic Prostate-Specific Antigen screening, with many cases identified at an early stage.

FUTURE PLANS

IPCOR invites collaboration from the global cancer research community to use this resource to advance prostate cancer research and improve patient outcomes worldwide. IPCOR aims to continue updating long-term survival follow-up data for this cohort. It also plans to continue its collaborative approach with patients, engaging with the Lived Experience Advisory Panel in interpreting results emerging from this dataset. Moving forward, IPCOR is planning its next phase of the project, IPCOR 2.0. This will be a prospective, longitudinal, multi-centre clinical quality registry and biorepository.