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.
- Prostatic Neoplasms
- Surveys and Questionnaires
- Patient Reported
- Cohort Profile
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Contributors CV, MK, RD, ASF, PV and JDL contributed to the concept and design of the study. CV, MK, RD, MU, BD, EH, NU, JW, PV, DR, GT, MC, RTC, PHB and ASF contributed to the acquisition, analysis and interpretation of the data. All authors have read and approved the final version of the manuscript to be published.
Funding The Alberta Prostate Cancer Registry and Biorepository is funded by The Bird Dogs and the Alberta Cancer Foundation (grant number 26491) and the Prostate Cancer Canada Movember Translation Acceleration (grant TAG2004-03).
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement All data relevant to the study are included in the article. The Alberta Prostate Cancer Research Initiative’s prostate cancer registry contains deidentified participant data. Requests for access can be made via https://apcari.ca/our-research/biorepository/
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