The Danish Prostate Cancer 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.

All Danish patients with histologically verified prostate cancer are included in the DAPROCAdata.

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).

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).

DAPROCAdata is a comprehensive, yet still young clinical database. Efforts to improve data collection, data validity, and completeness are ongoing and of high priority.

Clinical epidemiology. 2016 Oct 25*** epublish ***

Mary Nguyen-Nielsen, Søren Høyer, Søren Friis, Steinbjørn Hansen, Klaus Brasso, Erik Breth Jakobsen, Mette Moe, Heidi Larsson, Mette Søgaard, Anne Nakano, Michael Borre

Department of Urology, Aarhus University Hospital, Aarhus; Diet, Genes and Environment, Danish Cancer Society Research Center, Copenhagen., Department of Pathology, Aarhus University Hospital, Aarhus., Danish Cancer Society Research Centre, Danish Cancer Society, Copenhagen., Department of Oncology, Odense University Hospital, Odense., Copenhagen Prostate Cancer Center and Department of Urology, Rigshospitalet, University of Copenhagen, Copenhagen., Department of Urology, Næstved Hospital, Næstved., Department of Oncology, Aalborg University Hospital, Aalborg., Department of Clinical Epidemiology, Aarhus University Hospital., Department of Clinical Epidemiology, Aarhus University Hospital; Competence Centre for Health Quality and Informatics (KCKS-Vest), Aarhus, Denmark., Department of Urology, Aarhus University Hospital, Aarhus.