What is the UGICR?
The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers.
The UGICR was established in 2015, and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science.
The UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the pancreas, oesophagus, stomach, liver or bile ducts; and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.
The registry is overseen by a Steering Committee which includes: consumer representatives; a representative from the Victorian Department of Health and Human Services; Pancare Foundation; Cancer Council Victoria; Monash University; and clinicians from a number of participating hospitals.
Data collection
The UGICR collects information about the diagnosis, treatment and outcomes of individuals with an upper gastrointestinal cancer. This information is obtained by Monash University-trained data collectors from hospital medical records, private clinician medical records, and telephone or email surveys. All data collectors are individually approved by the relevant research ethics committee and have completed privacy and confidentiality training.
This information collected is used to measure the quality of care provided by participating hospitals. Reports are provided to participating hospitals to show their quality of care and outcomes compared with those of other participating hospitals. This highlights the areas where a hospital is providing good quality care and where improvements in care might be made.
Participant information will be used by the registry team to generate reports for hospitals, publications, presentations, and future research projects that require registry data. The information will be reported in such a way that you cannot be identified.
The data in the UGICR may also be used for future research projects. Any research project wishing to access registry data are required to get approval from the relevant ethics committee/s and the UGICR Steering Committee.
Funding
The Victorian Government provided initial seed-funding for the UGICR. The
Pancare Foundation and industry partners have provided core sponsorship for this
registry. The registry is also supported by a related NHMRC project
grant.
Meet the Team
The UGICR is governed by a Steering Committee and three clinical working parties, the Hepatopancreatobililary Working Party, the Oesophagogastric Working Party and the Primary Liver Working Party.
The team consists of Elysia Greenhill (Program Manager), Dr Liane Ioannou (Mid-Career Research Fellow), Harpreet Kaur (Data Officer), Dr Lin Li (SCANPatient Research Fellow) and Eileen Lam (Project Officer).