Using patient registries to expand understanding of urological cancers 

Principal investigator

Professor Ben Tran, Walter & Eliza Hall Institute of Medical Research

The treatment landscape for genitourinary cancers is rapidly evolving.  There are multiple new treatments demonstrating survival benefits across all cancers.

Clinicians need to better understand how these treatments will be used in a real world setting, and whether the improved outcomes translate from trials into the real world.  In addition, real world data is required to identify the evolving areas of need for our patients.

Registries, containing treatment data prospectively supplied by clinicians are a valuable tool for collecting data, especially when the clinical locations or patient populations are dispersed or small in number.

The Walter and Eliza Hall Institute has created four registries: ePAD, KRAB, BLADDA and iTestis, to support a greater understanding of genitourinary cancers and the outcomes of various treatments.

ePAD (Electronic Prostate cancer Australian Database) was developed in 2016 to support clinicians by collecting real world information about patients with advanced prostate cancer.

Patients are enrolled prospectively by their clinicians when they have been diagnosed with advanced prostate cancer, and data about their subsequent treatments, responses and outcomes is tracked. The data includes information from multiple sources including medical oncologists, urologists, radiation oncologists and hospital admissions.

The program evaluates the impact of age, cardiovascular co-morbidity and performance status on treatment recommendations, as well as interactions with other treatments where co-morbidities exist. It maps survival outcomes and investigates the role of novel hormonal therapies in changing tumour biology.

ePAD was recently updated to capture data on new treatments accessible in Australia, providing valuable information about treatment outcomes for different types of patients that will help guide clinicians in treating current and future patients.

The ePAD database has also been updated to accommodate data from the molecular testing of tumours. This inclusion results from the recent understanding that genetic changes can occur within tumours, which can impact the behaviour of the tumour.

Until now, there has been little local data regarding the treatment landscape for Metastatic Renal Cell Carcinoma (mRCC) in Australia. 

Kidney canceR Australian registry and Biobank (KRAB) is Australia’s first prospective mRCC Registry, bringing together genitourinary clinicians from around Australia and facilitating collaboration in the RCC space, beginning with data, but with potential for translational research too. 

KRAB is a large, multi-site national mRCC database allowing Australian investigators to provide insight into Australian treatment practices, facilitates translational research and opens up the opportunity to conduct registry-based trials. 

It also enables Australian investigators to contribute to the International Metastatic RCC Database Consortium (IMDC), which has been very successful globally. All Australian investigators listed on IMDC abstracts and publications represent the KRAB dataset that has been contributed to IMDC.

At November 2022, over 453 patients with mRCC diagnosed after 1 Jan 2017, across 15 sites in 3 states had contributed data to KBAB. Data is collected prospectively, with participating sites representing metro and rural practices, public and private practices, and academic/community-based practices.  This ensures that the KRAB data is reflective of population-level PBS data.

The BLADDA project is a multi-centre, non-interventional study that aims to collect data and biospecimens in patients with muscle invasive and advanced bladder cancer in Australia to determine patterns of treatment, facilitate translational research and be used as a platform from which registry based trials can be conducted.

BLADDA commenced in January 2018 and will continue for up to 10 years. This timeframe will allow for data collection to occur and evolve as the treatments for bladder cancer change.

The registry now houses data from over 1100 patients. As the number of patients enrolled into BLADDA increases, and as data mature, the academic output will increase substantially, as the dataset is interrogated to address important questions facing clinicians. 

Furthermore, BLADDA will be utilised as the data backbone for translational research, identifying predictive and prognostic biomarkers and exploring the uptake of molecular profiling across Australia.  Lastly, like all registries, BLADDA will provide benchmarking for all involved sites, allowing investigators to better understand how their practice patterns compare to other Australian sites, and perhaps indirectly improving quality of care across Australia.

Germ cell tumours (GCTs) are rare compared to other cancers, but are still the most common type of cancer in young men, formed from reproductive cells and mostly occurring in the testicles. These cancers are highly treatable, but determining the most appropriate treatment for each patient relies on a good foundation of clinical data.

In addition to the difficulty accessing information about treatments and subsequent outcomes, the rarity of GCTs makes it difficult to enrol sufficient numbers of patients onto clinical trials that address important clinical questions. 

This situation is made more difficult by the decentralisation of cancer treatment in Australia, as no single Australian centre can accumulate sufficient numbers of patients with GCT to generate any meaningful research, whether that be clinical, retrospective or translational.

iTestis was developed to fill the gap in detailed national clinical data to help clinicians to assess treatment options and resulting outcomes for their GCT patients.

iTestis aims to demonstrate that organised data and tissue collection from GCT patients across multiple sites, using a registry and biobank, can generate quality data and translational research.  The database will help to describe the current care and treatment patterns for GCT patients and identify any deficiencies or abnormalities to ensure that Australian GCT patients receive the best care possible.

BioGrid is providing the software development services required to create these registries, working closely with clinicians to ensure data collection applications match the clinic workflow for ease of use.

Once created, the registries will be connected to BioGrid’s data linkage platform.  BioGrid’s secure infrastructure, data linkage and curation is underpinned by BioGrid’s ethical and governance framework, enabling data to be used for approved collaborative clinical audit and research projects.