The Danish Prostate Cancer Database
Authors Nguyen-Nielsen M, Høyer S, Friis S, Hansen S, Brasso K, Jakobsen EB, Moe M, Larsson H, Søgaard M, Nakano A, Borre M
Received 27 November 2015
Accepted for publication 21 December 2015
Published 25 October 2016 Volume 2016:8 Pages 649—653
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Dr Colin Mak
Peer reviewer comments 2
Editor who approved publication: Professor Henrik Toft Sørensen
Mary Nguyen-Nielsen,1,2 Søren Høyer,3 Søren Friis,4 Steinbjørn Hansen,5 Klaus Brasso,6 Erik Breth Jakobsen,7 Mette Moe,8 Heidi Larsson,9 Mette Søgaard,9 Anne Nakano,9,10 Michael Borre1
1Department of Urology, Aarhus University Hospital, Aarhus, 2Diet, Genes and Environment, Danish Cancer Society Research Center, Copenhagen, 3Department of Pathology, Aarhus University Hospital, Aarhus, 4Danish Cancer Society Research Centre, Danish Cancer Society, Copenhagen, 5Department of Oncology, Odense University Hospital, Odense, 6Copenhagen Prostate Cancer Center and Department of Urology, Rigshospitalet, University of Copenhagen, Copenhagen, 7Department of Urology, Næstved Hospital, Næstved, 8Department of Oncology, Aalborg University Hospital, Aalborg, 9Department of Clinical Epidemiology, Aarhus University Hospital, 10Competence Centre for Health Quality and Informatics (KCKS-Vest), Aarhus, Denmark
Aim of database: The Danish Prostate Cancer Database (DAPROCAdata) is a nationwide clinical cancer database that has prospectively collected data on patients with incident prostate cancer in Denmark since February 2010. The overall aim of the DAPROCAdata is to improve the quality of prostate cancer care in Denmark by systematically collecting key clinical variables for the purposes of health care monitoring, quality improvement, and research.
Study population: All Danish patients with histologically verified prostate cancer are included in the DAPROCAdata.
Main variables: The DAPROCAdata registers clinical data and selected characteristics for patients with prostate cancer at diagnosis. Data are collected from the linkage of nationwide health registries and supplemented with online registration of key clinical variables by treating physicians at urological and oncological departments. Main variables include Gleason scores, cancer staging, prostate-specific antigen values, and therapeutic measures (active surveillance, surgery, radiotherapy, endocrine therapy, and chemotherapy).
Descriptive data: In total, 22,332 patients with prostate cancer were registered in DAPROCAdata as of April 2015. A key feature of DAPROCAdata is the routine collection of patient-reported outcome measures (PROM), including data on quality-of-life (pain levels, physical activity, sexual function, depression, urine and fecal incontinence) and lifestyle factors (smoking, alcohol consumption, and body mass index). PROM data are derived from questionnaires distributed at diagnosis and at 1-year and 3-year follow-up. Hitherto, the PROM data have been limited by low completeness (26% among newly diagnosed patients in 2014).
Conclusion: DAPROCAdata is a comprehensive, yet still young clinical database. Efforts to improve data collection, data validity, and completeness are ongoing and of high priority.
Keywords: prostate cancer, clinical quality indicators, database research
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