Clinical Epidemiology (Oct 2016)
The Danish National Penile Cancer Quality database
Abstract
Jakob Kristian Jakobsen,1 Buket Öztürk,2 Mette Søgaard2 1Department of Urology, 2Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus Nord, Denmark Aim of database: The Danish National Penile Cancer Quality database (DaPeCa-data) aims to improve the quality of cancer care and monitor the diagnosis, staging, and treatment of all incident penile cancer cases in Denmark. The aim is to assure referral practice, guideline adherence, and treatment and development of the database in order to enhance research opportunities and increase knowledge and survival outcomes of penile cancer. Study population: The DaPeCa-data registers all patients with newly diagnosed invasive squamous cell carcinoma of the penis in Denmark since June 2011. Main variables: Data are systematically registered at the time of diagnosis by a combination of automated data-linkage to the central registries as well as online registration by treating clinicians. The main variables registered relate to disease prognosis and treatment morbidity and include the presence of risk factors (phimosis, lichen sclerosus, and human papillomavirus), date of diagnosis, date of treatment decision, date of beginning of treatment, type of treatment, treating hospital, type and time of complications, date of recurrence, date of death, and cause of death. Descriptive data: Registration of these variables correlated to the unique Danish ten-digit civil registration number enables characterization of the cohort, individual patients, and patient groups with respect to age; 1-, 3-, and 5-year disease-specific and overall survival; recurrence patterns; and morbidity profile related to treatment modality. As of August 2015, more than 200 patients are registered with ~65 new entries per year. Conclusion: The DaPeCa-data has potential to provide meaningful, timely, and clinically relevant quality data for quality maintenance, development, and research purposes. Keywords: penile cancer, squamous cell carcinoma of the penis, clinical quality, national database, epidemiology, treatment
