Newsletter  #6             

      December 2020
The NGOR operational team would like to wish everyone a very happy holidays. Thank you to all the clinicians, patients, data managers and other researchers who have allowed the NGOR to thrive in 2020 despite the difficulties COVID-19 has placed on us all this year. It has been amazing to watch the registry grow and a huge achievement to be awarded an Medical Research Future Fund (MRFF) Ovarian Cancer Grant. We look forward to expanding the registry further in 2021 and continuing the work towards the improvement of patient outcomes and quality of care for all Australian women with gynaecological cancers.

Wishing you all a relaxing break and happy New Year!

>750 women with ovarian, tubal and peritoneal cancer have been recruited

15 hospitals & health services involved. 13 applications in progress

25 gynaecological oncologists, 4 radiation oncologists and 4 medical oncologists
What a year it has been! The NGOR is most grateful to the chairs and members of the various Working Groups and reference groups for their contributions. The clinical indicators for the OTP module have been refined and finalised and the indicators for endometrial cancer, the most common that we encounter have been finalised and agreed upon. A pilot study of data collection is proposed and should get underway in January.
The Epworth Foundation grant finished at the end of March 2021 and we will need to pursue further funding to progress the Endometrial, Cervical and Vulvar cancer modules.
Concerns have been raised about the workload that the NGOR project will require.  Many of the clinical indicators are relatively simple and much of the information will already be in unit-based databases and will not require a lot of data manager input.
The NGOR can assist units and individuals with a REDCap database tailored for the NGOR. For those who are already have their own databases the registry will be able to receive exported data in a standard format such as .xlsx or .xml. Help with data collection can be provided on a per patient basis.
We are building contacts with overseas registries to share experiences and ideas. We are hopeful that by establishing these contacts we will be able to facilitate international comparisons of outcomes and establish benchmarking. We would certainly like to hear from anyone who has an overseas colleague who is involved in a gynaecological clinical quality cancer registry.
The last six months and the lockdown created quite a challenge and the lack of face-to-face meetings has made progress a bit more difficult.  Hopefully, we will be able to accelerate things in 2021.
I am personally most appreciative of the assistance and support that has been provided by the NGOR Team. Lastly, I wish you all my very best wishes for the Festive Season and a Happy New Year.
Robert Rome.
The Epworth Expansion project has enabled the NGOR to begin expansion to include three new modules, namely Endometrial, Cervical and Vulvar Cancer. Despite lockdown, a series of teleconferences and online discussions for each working group have taken place to refine a list of quality indicators.
The Endometrial Cancer Working Group has developed a set of 13 QIs, which were presented during Epworth's Research Week. The database for the endometrial cancer module is under development in preparation for pilot data collection which will commence soon. The Cervical Cancer Working Group have a set of 14  QIs are under active consideration. A preliminary discussion document was circulated to the Vulvar-Vaginal Working Group and there has been active online discussion about which indicators will be appropriate for this module. 

We have been granted an extension until March 2021 due to delays COVID-19 placed on the project. The extra time will allow us to begin pilot data collection for the Endometrial Cancer module. 
Working Group Members
Endometrial: Alison Brand, Orla McNally, Viet Do, Sumitra Ananda, Robert Rome
Cervical: Selvan Pather, Yeh Chen Lee, Michael Burling, Narayan Kailash, Archanad Rao, Robert Rome
Vulva-Vaginal: Geoff Otton, Anne Mellon, David Bernshaw, Peter Sykes, Robert Rome

On World Ovarian Cancer day (May 8th), the NGOR was one of eight projects to be awarded MRFF funding, with the aim to build upon the registry's three year pilot and establish a national clinical quality registry for ovarian cancer that monitors the extent and variation in key quality indicators and to collect PROMs.
A great deal has been achieved already for the MRFF grant. All four reference groups have been finalised. The PROMs, data linkage and rare tumour groups have had their first meetings over the past couple of months. Retrospective data collection at the original pilot sites has begun with data completeness checks for each site being completed, and exploring how the registry can support data collection. Phase two has also commenced, which involves obtaining governance approval for gynaecologic oncology centres and highest volume sites.

Reference Group Chairs
Rare Tumours: Yeh Chen Lee
PROMs: Penelope Schofield
Data Linkage: Penny Webb
Expansion: Rhonda Farrell
Throughout 2020 we have been updating our Ovarian, Tubal and Peritoneal cancer quality indicator set following the completion of the three year ovarian pilot. Thank you to the Ovarian Cancer Working Group for their tireless work on the quality indicators, with special thanks to our clinical lead A/Prof Robert Rome. 

There are now 15 quality indicators including 6 under review which were presented during our Executive & Steering Committee meeting on the 17th November 2020.

Welcome to the registry South Australia and Western Australia! They have joined the registry this year as part of the second phase of the OvCR Grant.
Chris O'Brien Lifehouse
Royal Hospital for Women
Royal North Shore
John Hunter Hospital
Liverpool Hospital

Peter MacCallum Cancer Centre
St Vincent's Private 
Burnside Hospital 
Royal Adelaide Hospital
St Andrews
Calvary North
Flinders Hospital 

St John of God (Subiaco and Murdoch)
Our research assistant, Amy Hatton, is sadly leaving our team early next year to begin her intern year at Royal Women's Hospital. We would like to wish her the luck in her new role!
Welcome Tran Nguyen! She will be helping the team with general research assistant tasks. We are also welcoming a number of new site based data managers to help us with data collection.
Rome RM, Zalcberg J, Brand A, McNally O, Do V, Ananda S, Stenlake A, Vicario E, Heriot NR, Sporik AV. DEVELOPING A CLINICAL QUALITY REGISTRY FOR GYNAECOLOGICAL CANCERS, Melbourne, Australia, Epworth Healthcare Research Month, October 2020 (Poster Presentation)

Upcoming in 2021 PROMs publication

During the quiet period in December and January, please let us know if you would be interested in getting involved or writing a paper using NGOR data. 
Continue to send all new eligible patients to the NGOR and ensure all the relevant patient information is included. A person is eligible to the NGOR if they:
  • Are 18+ years old and have been recently diagnosed with a gynaecological cancer
  • Were diagnosed or received treatment for their cancer at a hospital that is participating in NGOR
  • Do not need an interpreter and/or are believed to understand written English
Pilot data collection for the endometrial cancer module will begin soon, be prepared to send us eligible patients with endometrial cancer in addition to OTP cancer patients. 
OvCR: Data Linkage Reference Group Meeting:30th November 5:30pm
OvCR: PROMs Reference Group Meeting: 14/15th December 5:00pm
ANZGOG: Ovarian Cancer Education Webinar: 1st December: 5.00PM - 6.30PM
ANZGOG: From Research to Clinical Practice - Patient Reported Outcomes in Gynaecological Cancers: February 12th 2021

Steering Committee Meeting: May 2021 (TBC)

OvCR Meetings
Executive Committee Meeting: Bi-monthly in 2021
Expansion Reference Group Meeting: January/February 2021
PROMs Reference Group Meeting: January/February 2021
Rare Tumours Reference Group Meeting: February 2021
Data Linkage Reference Group Meeting: TBC
Monash University shut down period is 23rd December - 7th January (incl). If you urgently need to get in contact with us, please call Natalie.
T: 0399030435 M: +61413162983.
Email:  | Phone: (03) 9903 0435 | 1800 432 213 | Mail: Level 2, 553 St Kilda, Melbourne VIC 3004

Registry Coordinator: Natalie Heriot |
Academic Lead: Prof John Zalcberg 
Clinical Lead: A/Prof Robert Rome
Research Assistant: Amy Hatton | (Ethics and Governance)
Research Assistant: Alice Sporik |

Copyright 2020 National Gynae-Oncology Registry, All rights reserved.

The National Gynae-Oncology Registry would like to thank Ovarian Cancer Australia, the CASS Foundation, the Australian Society of Gynaecologic Oncologists Inc. and the Epworth Medical Foundation for their generous support.

Our mailing address is:
c/o Natalie Heriot, National Gynae-Oncology Registry, School of Public Health and Preventive Medicine, Monash University, Level 2, 553 St Kilda Road, Melbourne, Victoria 3004, Australia

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Cancer Research Program, Monash University · School of Public Health and Preventive Medicine, Monash University, 553 St Kilda Road · Melbourne, VIC 3004 · Australia

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