The Australian Penile Cancer Clinical Registry: a comprehensive national approach to data collection

Penile cancer is a rare malignancy, with an Australian incidence of 0.6 in 100 000 men, with a wide range of clinical presentations, from localised, curable tumours to aggressive forms with high morbidity and mortality. Epidemiological data and management guidelines for penile cancer in Australia are limited. The Australian Penile Cancer Clinical Registry (APCCR) aims to address this gap through a centralised database studying local risk factors, treatment effectiveness, and outcomes.

The APCCR is a national, multicentre, prospective clinical quality registry.

The primary objective is to map demographic and tumour characteristics, human papillomavirus infection rates, long-term surgical and non-surgical (radiotherapy and chemotherapy) interventions in penile cancer. Secondary objectives include elucidating disparities and interdisciplinary gaps in care and identifying areas for further studies.

The registry aims to capture adult men with penile cancer in, utilising retrospective data collection and a prospective cohort design. Retrospective data are extracted from existing medical records, and prospective data are collected at enrolled sites. The registry is built in Research Electronic Data Capture (REDCap) and hosted on BioGrid Australia servers, enabling standardised data collection. Registration with the Australian Register of Clinical Registries is pending approval.

The pilot phase of the APCCR is currently operational, with ongoing site recruitment. Five sites in Victoria and New South Wales are currently enrolled in the registry. The APCCR Steering Committee determined reporting and data protocols to ensure accurate data collection. The dataset was developed to comprise relevant clinical metrics on penile cancer diagnosis, disease, intervention, and surveillance.

The APCCR is a robust platform for furthering the understanding of penile cancer diagnostic and treatment practices in Australia, aiming to further research and clinical practice changes. This will drive further collaboration and improvements in outcomes for Australian men affected by penile cancer, particularly with ongoing national expansion and improved longitudinal data.