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Title: The Upper Gastrointestinal Cancer Registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers.
Austin Authors: Maharaj, Ashika D;Holland, Jennifer F;Scarborough, Ri O;Evans, Sue M;Ioannou, Liane J;Brown, Wendy;Croagh, Daniel G;Pilgrim, Charles H C;Kench, James G;Lipton, Lara R;Leong, Trevor;McNeil, John J;Nikfarjam, Mehrdad ;Aly, Ahmad ;Burton, Paul R;Cashin, Paul A;Chu, Julie;Duong, Cuong P;Evans, Peter;Goldstein, David;Haydon, Andrew;Hii, Michael W;Knowles, Brett P F;Merrett, Neil D;Michael, Michael;Neale, Rachel E;Philip, Jennifer;Porter, Ian W T;Smith, Marty;Spillane, John;Tagkalidis, Peter P;Zalcberg, John R
Affiliation: Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
Monash Health, Melbourne, Victoria, Australia
Alfred Health, Melbourne, Victoria, Australia
Public Health and Preventative Medicine, Monash University, Melbourne, Victoria, Australia
Department of Surgery, Monash University, Melbourne, Victoria, Australia
Austin Health, Heidelberg, Victoria, Australia
Department of Surgery, Austin Health, University of Melbourne, Melbourne, Victoria, Australia
Public Health and Preventative Medicine, Monash University, Melbourne, Victoria, Australia
Western Health, Melbourne, Victoria, Australia
Alfred Health, Melbourne, Victoria, Australia
Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia
Cabrini Health, Malvern, Victoria, Australia
St Vincent's Hospital, Melbourne, Victoria, Australia
Population Health Division, QIMR Berghofer Medical Research Institute, Herston, Queensland, Australia
School of Medicine, Western Sydney University, Penrith South, New South Wales, Australia
Royal Melbourne Hospital, Melbourne, Victoria, Australia
Nelune Comprehensive Cancer Centre, Prince of Wales, Randwick, New South Wales, Australia
Peninsula Health, Melbourne, Victoria, Australia
Issue Date: 30-Sep-2019
Date: 2019-09-30
Publication information: BMJ Open 2019; 9(9): e031434
Abstract: The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia. It supports four cancer modules: pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation. The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile. The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers.
DOI: 10.1136/bmjopen-2019-031434
ORCID: 0000-0002-4725-613X
Journal: BMJ Open
PubMed URL: 31575580
Type: Journal Article
Subjects: biliary cancer
clinical registry
gastric cancer
liver cancer
oesophageal cancer
pancreatic cancer
population health
quality improvement
quality of care
upper gastrointestinal cancers
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