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

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.

The Calgary Prostate Cancer Centre has the highest accrual for a novel ultrasound study in prostate cancer

“We have enrolled over 400 patients at our site, reaching our enrollment goal much faster than all other sites across North America. We are now planning on adding in 250 more patients to this trial because of the encouraging results found with the first arm of the trial. Our site tied with the highest accrual goal and surpassed all other sites to meet our enrollment goal.”

The study is a “Multi-Center trial of high-resolution transrectal ultrasound versus standard low-resolution transrectal ultrasound for the identification of clinically significant prostate cancer”

The only definitive method for diagnosing prostate cancer is through a prostate biopsy. This procedure includes the use of an ultrasound machine to guide both freezing needles and biopsy needles into the prostate. The ultrasound machine that is currently in use is a low-resolution ultrasound machine which means that although it is good at seeing the entire prostate gland to guide the needles, it is often unable to visualize the prostate in enough detail to be able to see different lesions and areas of concern within it. Thus, many biopsy samples are taken systematically with two samples from each section of the prostate. Recently a new ultrasound machine has been created that gives images of the prostate with much higher resolution, allowing the radiologist performing the biopsy to see details within the prostate that were previously inaccessible. A study using this new high-resolution ultrasound machine is being completed at the Prostate Cancer Centre to compare the adequacy of this new machine to detect prostate cancer over the standard low-resolution machine. Over 650 patients will be enrolled in this study!


- Eric Hyndman