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Newsletter #9
April 2020
You are receiving this newsletter due to your association with The Upper GI Cancer Registry. We encourage you to forward this email onto colleagues or others interested in the registry's activities.
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COVID-19 UPDATE
As per the Monash University guidelines, Upper GI Cancer Registry operational team members are now working from home. Our team is trying to ensure activities are continuing as normal as possible, but please aware that there may be some delays as we adjust. Recruitment and data collection is continuing for sites where we have remote access to medical records but it is on hold for sites that require onsite data collection and private rooms data collection. 

The Upper GI team hope that you are all staying safe and well during the COVID-19 pandemic.
UGICR PARTICIPANTS BY MODULE
UGICR participant recruitment includes anyone diagnosed from 2016 onwards. The registry now has over 3,700 participants recruited to its three modules with retrospective data collection for these participants keeping our data collectors very busy.
PANCREATIC MODULE IN NEW SOUTH WALES
Screening and data collection has started at Royal North Shore Hospital, which is a site with the largest pancreatic caseload in NSW. There are now over 700 NSW patients recruited to the pancreatic cancer module of the registry. We also received our first potential participant list from Albury-Wodonga Hospital and commenced data collection.
UGICR Participating Health Services
GENERAL UPDATE
PANCREATIC MODULE - Site Quality Indicator Reports
Work is well underway on our first benchmarked Pancreatic Module quality indicator reports for sites. These reports are being produced with the help of a data scientists using R statistical software and represent an exciting milestone for the registry. A first version will soon be reviewed by the HPB & PCR4QI working groups prior to finalising and sending to each site's investigator(s) for feedback.
Click for Pancreatic Module QIs
BILIARY MODULE PILOT - Update
The Biliary Module of the UGICR is currently in the pilot phase. We have successfully recruited 268 participants from 9 Victorian health services, including metropolitan, regional, public and private health services. In preparation for pilot data analysis, UGICR data collectors are now diligently completing data collection on the recruited participants. Upon completion, the data will be analysed with the Hepatopancreatobiliary Working Party to review the completeness & feasibility of data before revising the quality indicator set where indicated.
Click for Biliary Module QIs
OESOPHAGOGASTRIC MODULE - Update
The Oesophagogastric Module has been the focus of the Victorian UGICR data collector’s efforts over the past few months and we are seeing some great progress as a result. Since November 2019, the number of participants recruited has increased from 594 to 1122, and the number of those with data collected has increased from 257 to 530. There is still plenty more work to be done to get through all of the data dating back to 2016 and this will keep us busy for the remainder of the year.
Click for Oesophagogastric Module QIs
PRIMARY LIVER CANCER (HCC) MODULE - Update 
The registry has secured initial funding to begin work on the development of a hepatocellular carcinoma module (Primary Liver Module). This work will be in collaboration with an established clinical working group (including representation from the Australian Liver Association Clinical Research Network, Australian National Liver Cancer Collaborative and The Liver Foundation) and is anticipated to begin later this year.
 
NEW PUBLICATION
Congratulations to Ashika Maharaj and author team on the publication of a systematic review of 'Patient-reported outcome measures (PROMs) in pancreatic cancer.' Published in the HPB journal, the study examines the numerous PROMs applied in pancreatic cancer and concludes with three recommended PROMs. The study is part of Ashika's PhD which examines the quality of care, from both a clinical and patient perspective, in pancreatic cancer.
PANCREATIC CANCER PATIENT-REPORTED OUTCOME MEASURES REGISTRY PILOT
In collaboration with MPCCC, the UGICR is piloting the electronic collection of PROMs and PREMs in registry participants who have been treated across Alfred, Eastern, Monash, and Peninsula Health Services. Maddy Quinn, UGICR research assistant, presented projects protocol at the Victorian Cancer Survivorship Conference in March.

The pilot is currently in the data collection phase, and so far 5 out of the 15 participants invited to take part have successfully completed the questionnaire. We look forward to seeing the results towards the end of the year.
View more information about the project HERE
View the poster HERE
 

RELATED PROJECT UPDATES

SYMPTOM-UGI 

SYMPTOM-UGI is a collaborative study between the UGICR and Prof Jon Emery at the University of Melbourne, investigating the patient pathways from the onset of symptoms to cancer diagnosis. The study successfully recruited participants through the UGICR. Prof Emery and his team then conducted interviews with participants and obtained data from their GPs.

The University of Melbourne team is currently analysing this data. We look forward to sharing the outcomes of this study with you in due course. 

 
THE UPPER GASTROINTESTINAL CANCER DATA LINKAGE PROJECT
NADIA KHAN (PhD student)
The project aims to map the patterns of supportive care utilisation, pain management and adjuvant therapy utilisation in pancreatic and oesophagogastric cancers across Victoria. A range of administrative and registry-based data-sets will be linked by the Centre for Victorian Data Linkage.
  • Ethics approval has been obtained and phase 1 of the linked data is anticipated to be available for analysis in mid-2020.
  • This work will be supplemented with patient/caregiver interviews (currently ongoing) and clinician surveys to understand the barriers and enablers associated with supportive care utilisation. 
The PROpatient trial is a registry-based randomised controlled trial, aiming to determine if symptom monitoring, using PROs, integrated into clinical practice improves health outcomes for patients with pancreatic and oesophagogastric cancer.
Click for the PROpatient April Newsletter
PANCREATIC IMAGE BIOBANK
The UGICR has been awarded $100,000 from the Avner Pancreatic Cancer Foundation to develop a pancreatic cancer CT image biobank for a pilot study to compare European and Australian Healthcare practices. A virtual multi-disciplinary team, will investigate whether Australian patients with potentially operable pancreatic tumours are less likely to be offered surgery in comparison to European patients for the same stage of disease.
If you would like to know more about the Avner Pancreatic Cancer Foundation please visit their website
Meetings & Events
UGICR Steering Committee
Next: May 2020 TBC
HPB Working Party
Next: May 2020 TBC
OG Working Party
Next: June 2020 TBC
PCR4QI Investigator Meeting
Next: May 2020 TBC
PROpatient Trial Steering Committee
Next: June 2020 TBC
More Information on the Pancreatic Image Biobank
Staffing Changes
A warm welcome to our newest UGICR operational team members Alice Sporik (Research Assistant), and Shu-Yu Tew (Data Scientist), as well as our new data collectors: Arnold Clever, Jaidyn Muhandiramge, Cassandra Bakker, Madeline Flanagan, and Carla Edgley. We also say thank you and goodbye to Claire Zammit who recently left the UGICR data collector team to work on another project within Monash University. We wish Claire all the best for her new role.
Project Details

Project Leads

UGICR Academic Lead

Prof John Zalcberg

PCR4QI Academic Lead

A/Prof Sue Evans

Pancreatic Clinical Lead

Dr Daniel Croagh​

Biliary Clinical Lead

Dr Charles Pilgrim​

Oesophagogastric Clinical Lead

Prof Wendy Brown

Contact Us: 

Primary Contact

Ms Jennifer Holland - Registry Coordinator

P: (03) 9903 0323
E: ugicr@monash.edu
W: www.ugicr.org.au
 

NSW Contact
Dr Bronwyn Brown - NSW Coordinator
Mon-Wed

P: (02) 4634 4567
E: B.Brown@westernsydney.edu.au
UGICR Publications
Click for UGICR Steering Committee
Twitter Twitter
Website Website
Email Email
The UGICR would like to thank the Victorian Government, National Health and Medical Research Council (NHMRC), Pancare Foundation, Specialised Therapeutics Australia, Servier Australia and Eli Lilly Australia for their generous support of this registry.

The UGICR would also like to thank the School of Public Health and Preventive Medicine units including the Registry Sciences Unit, the Victorian Cancer Registry and participating health services, who have provided support to the registry.
Copyright © 2020 Upper Gastrointestinal Cancer Registry, All rights reserved.
You are receiving this email because of your associations with the Upper Gastrointestinal Cancer Registry, Monash University.


Our mailing address is:
Upper Gastrointestinal Cancer Registry
School of Public Health and Preventive Medicine
Monash University
553 St Kilda Road
Melbourne, Victoria 3004
Australia






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