The Danish Prostate Cancer Database (DAPROCAdata)
Mary NGUYEN NIELSEN, Aarhus University Hospital (Affiliation 1) / Danish Cancer Society Research Center (Affiliation 2), Denmark
HØYER S. 3
, FRIIS S. 4
, HANSEN S. 5
, BRASSO K. 6
, JAKOBSEN E. 7
, MOE M. 8
, LARSSON H. 9
, SØGAARD M. 9
, NAKANO A. 9, 10
, BORRE M. 1
1 Department of Urology, Aarhus University Hospital, Aarhus, Denmark
2 Diet, Genes and Environment, Danish Cancer Society Research Center, Copenhagen, Denmark
3 Department of Pathology, Aarhus University Hospital, Aarhus, Denmark
4 Statistics, Bioinformatics and Registry, Danish Cancer Society Research Centre, Copenhagen, Denmark
5 Department of Oncology, Odense University Hospital, Odense, Denmark
6 Copenhagen Prostate Cancer Center and Department of Urology, Rigshospitalet and the University of Copenhagen, Copenhagen, Denmark
7 Department of Urology, Næstved Hospital, Næstved, Denmark
8 Department of Oncology, Aalborg University Hospital, Aalborg, Denmark
9 Department of Clinical Epidemiology, Aarhus, Denmark
10 Competence Centre for Health Quality and Informatics (KCKS-Vest), Aarhus, Denmark
The Danish Prostate Cancer Database (DAPROCAdata) is a nationwide clinical cancer database that has prospectively collected data on incident prostate cancer patients in Denmark since February 2010. The overall aim of 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 DAPROCAdata.
Main variables: DAPROCAdata registers clinical data and selected characteristics for prostate cancer patients at diagnosis. Data are collected from 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, TNM cancer staging, PSA values, and therapeutic measures (active surveillance, surgery, radiotherapy, endocrine therapy, and chemotherapy).
In total, 22,332 prostate cancer patients 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. However, the PROM data is 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.
The authors declare no conflicts of interests. This paper was funded by the Program for Clinical Research Infrastructure (PROCRIN) established by the Lundbeck Foundation and the Novo Nordisk Foundation and administered by the Danish Regions.