PMID- 33067276
OWN - NLM
STAT- MEDLINE
DCOM- 20210514
LR  - 20240329
IS  - 2044-6055 (Electronic)
IS  - 2044-6055 (Linking)
VI  - 10
IP  - 10
DP  - 2020 Oct 16
TI  - 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.
PG  - e037222
LID - 10.1136/bmjopen-2020-037222 [doi]
LID - e037222
AB  - 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.
CI  - (c) Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No 
      commercial re-use. See rights and permissions. Published by BMJ.
FAU - Vasquez, Catalina
AU  - Vasquez C
AD  - Department of Oncology, University of Alberta, Edmonton, Alberta, Canada.
FAU - Kolinsky, Michael
AU  - Kolinsky M
AD  - Department of Oncology, University of Alberta, Edmonton, Alberta, Canada.
FAU - Djebah, Rume
AU  - Djebah R
AD  - Department of Oncology, University of Alberta, Edmonton, Alberta, Canada.
FAU - Uhlich, Maxwell
AU  - Uhlich M
AD  - Department of Computing Science, University of Alberta, Edmonton, Alberta, 
      Canada.
FAU - Donnelly, Bryan
AU  - Donnelly B
AD  - Department of Surgery, University of Calgary, Calgary, Alberta, Canada.
FAU - Fairey, Adrian S
AU  - Fairey AS
AD  - Department of Surgery, University of Alberta, Edmonton, Alberta, Canada.
FAU - Hyndman, Eric
AU  - Hyndman E
AD  - Department of Surgical Oncology, University of Calgary, Calgary, Alberta, Canada.
FAU - Usmani, Nawaid
AU  - Usmani N
AD  - Department of Oncology, University of Alberta, Edmonton, Alberta, Canada.
FAU - Wu, Jackson
AU  - Wu J
AD  - Department of Surgical Oncology, University of Calgary, Calgary, Alberta, Canada.
FAU - Venner, Peter
AU  - Venner P
AD  - Department of Oncology, University of Alberta, Edmonton, Alberta, Canada.
FAU - Ruether, Dean
AU  - Ruether D
AD  - Department of Oncology, University of Calgary, Calgary, Alberta, Canada.
FAU - Todd, Gerald
AU  - Todd G
AD  - Department of Surgery, University of Alberta, Edmonton, Alberta, Canada.
FAU - Chetner, Michael
AU  - Chetner M
AD  - Department of Surgery, University of Alberta, Edmonton, Alberta, Canada.
FAU - Crump, R Trafford
AU  - Crump RT
AD  - Department of Surgery, University of Calgary, Calgary, Alberta, Canada.
FAU - Beatty, Perrin H
AU  - Beatty PH
AD  - Department of Oncology, University of Alberta, Edmonton, Alberta, Canada.
FAU - Lewis, John D
AU  - Lewis JD
AUID- ORCID: 0000-0002-7734-1204
AD  - Department of Oncology, University of Alberta, Edmonton, Alberta, Canada 
      jdlewis@ualberta.ca.
LA  - eng
PT  - Journal Article
PT  - Research Support, Non-U.S. Gov't
DEP - 20201016
PL  - England
TA  - BMJ Open
JT  - BMJ open
JID - 101552874
SB  - IM
MH  - Alberta/epidemiology
MH  - Humans
MH  - Male
MH  - Patient Reported Outcome Measures
MH  - *Prostatic Neoplasms/diagnosis/epidemiology
MH  - Registries
MH  - Retrospective Studies
MH  - Technology
PMC - PMC7569975
OTO - NOTNLM
OT  - Biorepositories
OT  - Cohort Profile
OT  - OutcomeMeasures
OT  - Patient Reported
OT  - Prostatic Neoplasms
OT  - Registries
OT  - Studies
OT  - Surveys and Questionnaires
OT  - Translations
COIS- Competing interests: None declared.
EDAT- 2020/10/18 06:00
MHDA- 2021/05/15 06:00
PMCR- 2020/10/16
CRDT- 2020/10/17 05:24
PHST- 2020/10/17 05:24 [entrez]
PHST- 2020/10/18 06:00 [pubmed]
PHST- 2021/05/15 06:00 [medline]
PHST- 2020/10/16 00:00 [pmc-release]
AID - bmjopen-2020-037222 [pii]
AID - 10.1136/bmjopen-2020-037222 [doi]
PST - epublish
SO  - BMJ Open. 2020 Oct 16;10(10):e037222. doi: 10.1136/bmjopen-2020-037222.