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

PurposeThe 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.ParticipantsMen 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 dateFrom 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 plansThe 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.

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Eight year patient reported outcome data of the first 150 Dutch men on active surveillance in the Prostate cancer Research International Active Surveillance study (PRIAS)

European Urology Supplements ◽

10.1016/s1569-9056(19)31240-0 ◽

2019 ◽

Vol 18 (1) ◽

pp. e1707-e1708

Author(s):

L.D.F. Venderbos ◽

R.C.N. Van Den Bergh ◽

C.H. Bangma ◽

M.J. Roobol

Keyword(s):

Prostate Cancer ◽

Cancer Research ◽

Active Surveillance ◽

Patient Reported Outcome ◽

Outcome Data ◽

Surveillance Study ◽

Patient Reported ◽

Prostate Cancer Research

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Multi-institutional registry for prostate cancer radiosurgery: An observational clinical trial.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.7_suppl.98 ◽

2015 ◽

Vol 33 (7_suppl) ◽

pp. 98-98 ◽

Cited By ~ 1

Author(s):

Debra Freeman

Keyword(s):

Prostate Cancer ◽

Data Entry ◽

Disease Free Survival ◽

Patient Reported Outcome ◽

Related Data ◽

Patient Reported ◽

Collective Experience ◽

Prospective Trials ◽

Grade 3

98 Background: To report on the design, methodology and early outcome results of a multi-institutional registry study of prostate cancer radiosurgery. Methods: The Registry for Prostate Cancer Radiosurgery (RPCR) was established in 2010 to further evaluate the efficacy and toxicity of prostate radiosurgery (SBRT) for the treatment of clinically localized prostate cancer. Men with prostate cancer were asked to voluntarily participate in the Registry. Demographic, baseline medical and treatment-related data were collected and stored electronically in a HIPAA-compliant database, maintained by Advertek, Inc. Enrolled men were asked to complete short, multiple choice questionnaires regarding their bowel, bladder and sexual function. Patient-reported outcome forms were collected at baseline and at regular intervals (every 3-6 months) following treatment. Serial PSA measurements were obtained at each visit and included in the collected data. Results: From July 2010 to July 2013, nearly 2,000 men from 45 participating sites were enrolled in the registry. The majority (86%) received radiosurgery as monotherapy. At 2 years follow-up, biochemical disease free survival was 92%. No Grade 3 late urinary toxicity was reported. One patient developed Grade 3 gastrointestinal toxicity (rectal bleeding). Erectile function was preserved in 80% of men <70 yeats old. Overall compliance with data entry was 64%. Conclusions: Stereotactic radiosurgery is an alternative option to conventional radiotherapy for the treatment of organ-confined prostate cancer. The Registry for Prostate Cancer Radiosurgery represents the collective experience of multiple institutions, including community-based cancer centers, with outcome results in keeping with published, prospective trials of prostate SBRT.

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