Australian Penile Cancer Clinical Registry
Improving surgical decision making with the Australian Penile Cancer Clinical Registry
Principal investigator
Professor Niall Corcoran, Professorial Fellow – Surgery, Royal Melbourne Hospital
Penile cancer is a rare cancer in Australia, with about 100 cases diagnosed each year nationally.
However the impact on each patient is potentially life-changing, as it significantly impacts their quality of life and is linked to high rates of morbidity and mortality.
The challenge in treating penile cancer is the low occurrence – patients may present at any hospital, and the way they are managed depends on whether the appropriate expertise is available.
“There are a few specialists who have a specific interest in this cancer, but most urology units would only see a couple of new patients with the disease each year,” says Professor Niall Corcoran, Professorial Fellow of Surgery at the Royal Melbourne Hospital.
“In its early stages this cancer is quite straightforward to treat. In more advanced cases the treatment is a bit more nuanced and the decision making can be more complex, as some of the treatments have significant morbidity associated with them.”
Professor Niall Corcoran
Harnessing the power of cooperative expertise
To increase a broader understanding of both penile and testicular cancer, a fortnightly Multi Disciplinary Meeting (MDM) called PEN-TEST has been established to provide expert advice and discussion on the clinical implications of these cancer cases across Victoria.
PEN-TEST will enable specialists to share their experience, enabling MDM participants to learn from each other. This will be particularly valuable in relation to treatment aspects such as surgical management of metastatic disease radiation to metastatic disease chemotherapy.
The MDM will be supported by the development of the Australian Penile Cancer Clinical Registry, which will shed light on patterns of diagnosis and care, known and potential risk factors and clinical outcomes after surgical and oncological management. This will help Australian specialists to enhance the quality of care for people with penile cancer.
Unlike bladder cancer, which is also the focus of a registry being developed by the Royal Melbourne Hospital and BioGrid Australia, there is little existing retrospective clinical data for penile cancer, so the new registry will rely heavily on the collection of prospective data.
Initially conceived as a Victorian-based registry, the Australian Penile Cancer Clinical Registry has attracted interest in New South Wales so will initially cover both states, with the objective of ultimately expanding it to the other Australian States and Territories. Funding to establish the registry has been supported by a ‘Below the Belt” grant from the Australian and New Zealand Urogenital and Prostate Cancer Trials Group.
Building in international cooperation potential
One of the benefits of ‘starting from scratch’ has been the ability for the Australian Penile Cancer Clinical Registry project team to design a comprehensive and standardised database for clinical and pathological information that is aligned with similar international databases in the UK and Europe.
“In fact, we shared our database and data dictionary with the UK groups so they could clone us, so that the databases would be harmonised and enable them to work as a platform for translational research,” says Professor Corcoran. “We actually have a translational research project emanating from it already, and it will also support registry based-trials, particularly in the chemotherapy space.”
BioGrid’s registry expertise is bringing the project’s objectives to life
The Australian Penile Cancer Clinical Registry has been created in REDCap by BioGrid Australia within BioGrid’s secure web portal platform. Data is contributed by surgeons, oncologists, nurses and other clinical staff with direct care roles at contributing sites.
The registry adheres to established data standards and protocols and has the potential to contribute to national and international cancer registries and databases and enable international research collaborations.
Due to the low incidence of the disease, “You need a global consortium or global collective to have the numbers to do any kind of evidence-based research and that's ultimately what we're looking at,” says Professor Corcoran.
For Professor Corcoran there were obvious advantages of working with BioGrid Australia, the most relevant being their track record in setting up registries.
BioGrid knows all the bases that need to be covered when setting up this type of registry - for example, they ensure that the framework for the registry aligns with the relevant regulatory frameworks. And everything is done in consultation with us throughout the whole process
Professor Niall Corcoran
BioGrid’s focus on data security is another key strength, based on their intimate knowledge of the needs of clinical researchers, as is BioGrid’s evergreen collaboration agreement and data linkage platform ethics, both of which can be leveraged to share data for multi-site projects, thereby streamlining the governance process.
To find out more about how BioGrid Australia can help with registries to enable both clinician entered and patient reported data to be collected, ingested, accessed and analysed to provide data insights, browse the BioGrid website or contact us directly.