Upper Gastrointestinal Cancer Registry (UGICR)

Academic Lead:Professor John Zalcberg
Head, Cancer Research Program
Clinical Leads: Dr Dan Croagh, Pancreatic Cancer Lead, Hepatopancreatobiliary Working Party
Dr Charles Pilgrim, Biliary Cancer Lead, Hepatopancreatobiliary Working Party
Professor Wendy Brown, Oesophagogastric Cancer Lead, Oesophagogastric Working Party
Professor Stuart Roberts, Hepatocellular Carcinoma (HCC) Lead, HCC Committee
Registry Contact: Elysia Greenhill, Program Manager
Email: ugicr@monash.edu
Phone: 1800 432 231
Purpose / Aims: The UGICR is a clinical quality registry, which aims to identify variation in treatment and outcomes of individuals diagnosed with a primary cancer of the pancreas, oesophagus, stomach, liver, or biliary system. The UGICR will provide benchmarked reports on agreed indicators of best practice to drive improvements in quality of care and patient outcomes.
Population Captured: All people aged 18 years or older, who are diagnosed with pancreatic, oesophageal, gastric, liver (hepatocellular carcinoma) or biliary system cancer, that have been diagnosed, assessed or treated in a participating site.

The UGICR’s pancreatic cancer module is active in sites across Victoria and New South Wales. The oesophagogastric cancer and biliary system cancer modules of the registry are underway at all participating Victorian sites. The primary liver cancer module’s planning process is progressing steadily. Once completed, the module will be active at sites across the country.
Outcomes Collected: The UGICR collects information relating to patient diagnosis, treatment and outcomes; with additional data items collected for risk adjustment and patient demographics. The outcomes measured vary between modules.

In 2019, the UGICR began a pilot to collect patient-reported measures for participants with pancreatic cancer. The pilot study’s data collection was completed in 2021. Patient-reported measures may be collected on an ongoing basis in the future.

PROpatient, a registry-based randomised controlled trial commenced in 2021. It uses an online, real-time symptom-monitoring questionnaire to collect patient-reported outcomes for the improvement of health-related quality of life in patients newly diagnosed with pancreatic and oesophagogastric cancers.
Funding Source: Victorian Government provided initial seed-funding for the UGICR. The Pancare Foundation and industry partners have also sponsored this registry. The registry is also supported by a related NHMRC project grant.