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 2016 Fall Symposium

On Oct. 20-21, 2016, APCaRI will celebrate its 7th research meeting at the Banff Park Lodge, Alberta.

Over 60 participants including clinicians, scientists, clinical research personnel, trainees, benefactors and representatives of PCa support groups will participate in this fun and enriching event.

The team will benefit from the insight and experience that will be shared by keynote speakers: Drs. Edwin Wang, Professor Depts. of Biochemistry & Molecular Biology, Medical Genetics, and Oncology, McGill University;Roy Duncan, Dept. Microbiology & Immunology and Biochemistry and Pediatrics, Dalhousie University; Susan J. Done, Associate Professor, Departments of Laboratory Medicine and Pathobiology and Medical Biophysics, University of Toronto; and Christopher Bown, Gowlings

In addition, we will have 4 talks from senior scientists Drs. Juan Jovel (Dept Medicine, U of A), Len Luyt (Chemistry Department, U of A), Andries Zijlstra (Dept. of Pathology, Microbiology, and Immunology, Vanderbilt University), Desmond Pink (Dept Oncology, U of A) and John Lewis (Dept Oncology, U of A), and 16 short talks from trainees from different institutions in the province.

Agenda-APCaRI-2016-fall-symposium

Generously supported by the Bird Dogs and the Alberta Cancer Foundation

- Catalian Vasquez