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.

Its nearly time for the 2018 APCaRI Fall Symposium!

APCaRI will celebrate its 11th research meeting at the Banff Park Lodge, in Banff, Alberta on October 26 to 27, 2018. Please welcome our two invited speakers who will be joining the Symposium this year:

Alison Allan, PhD
Chair, Department of Anatomy & Cell Biology
Associate Professor, Departments of Anatomy & Cell Biology and Oncology
Western University, Ontario CA
and
Melina Cimler, PhD
CEO and Founder
PandiaDx LLC
Frisco, Texas

Previous fall symposia have had over 60 participants participating in this fun and enriching event, including clinicians, scientists, clinical research personnel, trainees, benefactors and representatives of PCa support groups.
Rose Pink Photography was at the 2017 APCaRI Fall Symposium and took these excellent images of the meeting, including the group photo seen in the featured image!

Plan on attending the 2018 Fall symposium to discuss and share ideas and enjoy the beautiful Rockies!
The APCaRI Fall symposium is generously supported by the Alberta Cancer Foundation and its’ donors.

- Perrin Beatty