The Danish National Penile Cancer Quality database

Abstract

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

Acknowledgments

Mary Nguyen Nielsen, MD, PhD student, generously provided the textual framework. This article was funded by the Program for Clinical Research Infrastructure established by the Lundbeck Foundation and the Novo Nordisk Foundation and administered by the Danish Regions. This study was conducted on behalf of the DaPeCa group.

Disclosure

The authors report no conflicts of interest in this work.