Publications

Cohort profile: 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

Vasquez C, Kolinsky M, Djebah R, Uhlich M, Donnelly B, Fairey AS, Hyndman E, Usmani N, Wu J, Venner P, Ruether D, Todd G, Chetner M, Crump RT, Beatty PH, Lewis JD. 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. BMJ Open. 2020 Oct 16;10(10):e037222. doi: 10.1136/bmjopen-2020-037222. PMID: 33067276; PMCID: PMC7569975

Abstract
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.

Keywords: Biorepositories; Cohort Profile; OutcomeMeasures; Patient Reported; Prostatic Neoplasms; Registries; Studies; Surveys and Questionnaires; Translations.

APCaRI is part of the Movember Prostate Cancer Outcomes network

The Prostate Cancer Outcomes Global Initiative to Compare and Reduce Variation is a project led by Movember aiming to improve health outcomes for men throughout their prostate cancer journey by focusing on variation in care and engaging clinicians and researchers across 14 countries worldwide.

The international team will collect data from prostate cancer patients segmented into the categories of data items as outlined by the International Consortium for Health Outcomes Measurement (ICHOM). These include patient factors, baseline tumor factors, pathological information, treatment variables, acute complications of treatment, and survival and disease control).

The Alberta Prostate Cancer dataset is highly aligned with the ICHOM standards. This means that we can effectively compare treatments and outcomes in Alberta with teams around the world to find ways to improve our care at home and abroad!

This is the result of hours of planning and true team work lead by Dr. Trafford Crump, the APCaRI Scientific and Data Quality Committee, and the APCaRI clinical, scientific, research and pathology teams. Thanks to your efforts, we are one step closer to improving patient outcomes.

- John Lewis