Project overview
The UGICR is a multimodular clinical quality registry (CQR).
It aims to improve care for individuals diagnosed with upper gastrointestinal cancers by identifying and addressing variation in care across Australia. The registry collects real-world data on the diagnosis, treatment and outcomes of patients with pancreatic, oesophagogastric, biliary (pilot phase only), and primary liver cancers. These data are used to evaluate the quality of care delivered at participating health services and to support quality improvement initiatives. Based in Victoria, with outreach to New South Wales, South Australia and Queensland, the UGICR represents the largest population-based clinical dataset for patients with upper gastrointestinal cancers in Australia.
Professor John Zalcberg
Upper GI medical oncologist, Emeritus Professor of Cancer Research at School of Public Health and Preventive Medicine at Monash University
Monash University
Upper GI Cancers: Pancreatic, Oesphagogastric (OG), Biliary (pilot only) and Primary Liver cancers
Pancare funded
$277,500 (between 2016-2022)
Research aims
The aim of this project is to use real-world data to assess the quality of care for individuals with upper gastrointestinal (GI) cancer.
Results
The UGICR is currently based in Victoria with outreach to New South Wales, South Australia and Queensland (for the primary liver module), represents the most comprehensive source of clinical data for patients with upper gastrointestinal cancers in Australia. To date, the registry has enrolled over 10,000 patients across all modules from more than 60 public and private metropolitan and regional sites in Victoria, as well as participating sites in New South Wales (pancreatic and primary liver modules) and South Australia and Queensland (primary liver module).
The pancreatic cancer module is well established, with data collected on over 6,000 individuals in Victoria and New South Wales. Similarly, the oesophagogastric module has captured data for more than 4,700 individuals in Victoria. The biliary module completed a pilot phase with data collected on over 250 individuals, with further work underway for development of quality indicators. The primary liver module has recently commenced data collection, enrolling over 700 patients to date, and is leading the national expansion of the registry.
To date, the UGICR has completed eight sub-studies, has over 20 peer-reviewed journal publications, and presented findings at more than 45 conferences.
Impact
The UGICR routinely collects data on the diagnosis, treatment, and outcomes of individuals with upper gastrointestinal cancers. These data are used to assess and benchmark the quality of care delivered by participating health services. Regular reports are provided to sites, enabling health services to compare their performance and patient outcomes with other participating health services, identify areas of high-quality care, and target opportunities for improvement. In addition, the UGICR has recently released a publicly available 5-year outcomes report, providing population-level insights into patterns of care and outcomes across participating services.
What's next?
The UGICR will release Annual Reports and Quality Indicator reports on an ongoing yearly basis. The registry also supports a strong clinical and applied research program, with over 20 associated studies leveraging the data and infrastructure established through this quality-of-care initiative. UGICR provides an ideal platform for hypothesis-driven research in upper gastrointestinal cancers, including clinical trials, biobanks, and studies aimed at improving quality of care. Currently, more than 10 manuscripts arising from these associated studies are in progress.
As part of this project, infographics have been developed for oesophagogastric cancer, pancreatic cancer, and primary liver cancer. You can download these infographics below. Learn more about this project, visit the Upper GI Cancer Registry website here.