RT Journal Article
SR Electronic
T1 Irish Prostate Cancer Outcomes Research (IPCOR) registry: cohort profile
JF BMJ Open
JO BMJ Open
FD British Medical Journal Publishing Group
SP e090207
DO 10.1136/bmjopen-2024-090207
VO 14
IS 12
A1 Gordon, Noa
A1 Dooley, Cara
A1 Murphy, Áine
A1 Farooq, Wasfa
A1 Sullivan, Frank
A1 McDermott, Ray
A1 Sharp, Linda
A1 Watson, William
A1 Galvin, David
YR 2024
UL http://bmjopen.bmj.com/content/14/12/e090207.abstract
AB 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.Data are available upon reasonable request. The IPCOR dataset is available for access through a federated model. External researchers will contact the IPCOR project at ipcor@ucd.ie and be given access to a comprehensive data dictionary outlining the data available in the IPCOR dataset. The researchers will use this data dictionary to prepare their research proposal which will be reviewed by the IPCOR data access committee and approved by the IPCOR steering committee. Once ethical approval is obtained for the research project, the researchers can request dummy datasets and the necessary information to prepare their code for analysis. The code will be run by IPCOR staff members at UCD and the results will be provided to the external researcher. Full details are available in the data access section at www.ipcor.ie.