The Danish Prostate Cancer Database

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

Research output: Contribution to journalReview articlepeer-review

6 Citations (Scopus)

Abstract

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.

Original languageEnglish
JournalClinical Epidemiology
Volume8
Pages (from-to)649-653
Number of pages5
ISSN1179-1349
DOIs
Publication statusPublished - 2016

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