National Gynae-Oncology Registry May Newsletter

Newsletter #7

May 2021

The registry has now recruited over 1000 women with ovarian, tubal and peritoneal cancer since the registry started in 2017. We would like to thank everyone for their continued support of the registry.

REGISTRY OVERVIEW

Over 1100 recruited NGOR patients

31 hospitals & health services actively engaged with the registry and more joining soon

Strong clinical engagement with 33 gynaecological oncologists, radiation oncologists and medical oncologists providing clinical expertise.

A letter from our Clinical Lead A/Prof Robert Rome

We are making steady progress on a number of fronts.

We have made contact with overseas gynaecological cancer registries in the Netherlands and Scotland and we hope to further matters of mutual interest.

The Elimination of Cervical Cancer Elimination Project released its report on 26th March. The NGOR was mentioned within their cervical cancer treatment rate indicator, with the hope that as our cervical module progresses we will develop a high-quality measure to monitor cervical cancer treatment over time. To view the full report, click here. We hope to be able to offer assistance for this project.

The Cervical Cancer Working Group chaired by Selvan Pather is refining the clinical indicators and hopefully these will be ready for circulation to the clinical participants in the registry for comment in the near future.

The Vulvar Cancer Working Group chaired by Geoff Otton is also progressing the relevant clinical indicators.

A study is currently underway to test the Endometrial Cancer Clinical Indicators and the associated dataset on a cohort of 100 women with endometrial cancer who were treated at Epworth, the Royal Women’s Hospital and Monash Health in Victoria.

The OvCR continues to accrue patients and more than 1000 patients have been registered. The various subgroups are busy considering Quality Indicators for the non-epithelial ovarian malignancies and Patient Reported Outcomes (PROMs). Other subgroups are looking at improving data linkage and project expansion.

I would like to thank the WG members for their interest, wise input and generosity with their time to support the project and all the clinical participants and their data managers for their support of the registry. Finally, I would also like to thank the NGOR team at Monash for their operational support.

Robert Rome
Clinical Lead

RELATED PROJECTS

EPWORTH EXPANSION PROJECT

The Epworth Expansion Project has allowed the registry to expand to a multi-modular registry. Despite the challenges that the pandemic presented and due to the hard work of all the working groups, a finalised set of endometrial cancer quality indicators were developed. The database for the endometrial module has been created, and pilot data collection has begun at the Royal Women's Hospital, Monash Health and Epworth HealthCare. A draft set of 13 cervical cancer quality indicators have also been developed.

A huge thank you to all the clinicians and data managers involved in this project.

Epworth Expansion Working Group Members
Endometrial: Alison Brand, Orla McNally, Viet Do, Sumitra Ananda, Robert Rome
Cervical: Selvan Pather, Yeh Chen Lee, Michael Burling, Kailash Narayan, Archanad Rao, Robert Rome

Vulva-Vaginal: Geoff Otton, Anne Mellon, David Bernshaw, Peter Sykes, Robert Rome

OVARIAN CANCER REGISTRY (OvCR)

After over a year of consultation with the OTP working group and NGOR data managers, the new ovarian quality indicators have been finalised. The new OvCR database is live and data migration from the old database occured in early March. Retrospective data collection is underway at each of the original pilot sites to ensure we have complete and accurate records for all participants diagnosed from the start of the NGOR to the end of 2020, with the target completion by May 2021 to allow for our first MRFF report in June.

South Australia and Western Australia have officially joined the NGOR.

OvCR Reference Group Chairs
Rare Tumours: Yeh Chen Lee
PROMS: Penelope Schofield
Data Linkage: Penny Webb
Expansion*: Rhonda Farrell

*The Expansion Reference Group aims to increase the registry's population capture across Australia. This will first be achieved through the recruitment of all specialist gynaecological oncology units and hospitals nominated by clinicians.

SITE RECRUITMENT

CURRENT NGOR SITES

VICTORIA
Austin Health - pending
Ballarat Health Service - pending
Monash Health
Royal Women's Hospital
Cabrini Health
Epworth HealthCare
Mercy Hospital for Women
Werribee Mercy Hospital
Peter MacCallum Cancer Centre - pending
St Vincent's Private - pending
Frances Perry House
Warringal Private Hospital
Peninsula Health - pending

SOUTH AUSTRALIA
Burnside Hospital
Calvary North - pending
Flinders Hospital - pending
Royal Adelaide Hospital
Flinders Private Hospital - pending

NEW SOUTH WALES
Chris O'Brien Lifehouse
Royal Hospital for Women - pending
Royal North Shore - pending
John Hunter Hospital - pending
Liverpool Hospital - pending
Westmead Hospital
Westmead Private Hospital
Prince of Wales Private Hospital
St Georges Hospital
St Georges Private Hospital

WESTERN AUSTRALIA
Hollywood Private - pending
St John of God Subiaco
St John of God Murdoch
King Edward - pending

TASMANIA
Royal Hobart Hospital
Hobart Private Hospital

STAFF UPDATES

Tran Nguyen

Aleesha Whitely

Ms Tran Nguyen (M.HIM) began her studies with the bachelor of human anatomy and physiology and graduated from the masters of health information management in 2020. With experience in healthcare and hospital services including clinical casemix coding, implementation of new electronic health systems and the ACEMID cohort study, Tran has joined and made contributions to the OvCR; as a Research Assistant.

Aleesha Whitely joined the NGOR team as a Research Assistant in March 2021, following her completion of a Bachelor of Health Science at Swinburne University. In addition to her coursework, she spent 12 months working as a Data Scientist for Defence Science & Technology Group, and also conducted a research project on the risk factors for autism spectrum disorder, which she expects to publish a manuscript on in the near future.

Chelsea White

Lauren Friskin

Chelsea White joined the NGOR team as a Research Assistant in January 2021, following completion of a Bachelor of Psychological Sciences with Honours at Flinders University. Whilst undergoing her studies, Chelsea worked in the healthcare industry for a gynaecology medical specialist. Chelsea is passionate about improving the quality of care provided to women diagnosed with gynaecological cancers.

Lauren is a final year postgraduate Monash medical student with a keen interest in public health, currently on her scholarly intensive placement with NGOR. She is researching the impact of comorbidity on ovarian cancer prognosis, as well as the means by which other clinical quality registries collect their comorbidity data and the issues associated with data incompleteness.

CLINICIANS AND DATA MANAGERS

Please continue to send all new eligible patients to the NGOR and ensure all the relevant patient information is included. Please specify if we cannot recruit a patient for reasons such as language, mental health or memory related issues.

The registry has submitted an ethics amendment to have a waiver of consent for participants who do not understand written English. Can data managers please begin to review previously excluded cases to ensure they are still alive before recruitment begins.

UPCOMING MEETINGS

NGOR Meetings
Steering Committee Meeting: Late June
Working Group Meetings: (OTP, endometrial, cervical, vulvar): TBC

OvCR Meetings
Executive Committee Meeting: Bi-monthly in 2021
PROMs Reference Group Meeting: Beginning of May 2021
Rare Tumours Reference Group Meeting: April 2021
Data Linkage Reference Group Meeting: TBC
Expansion Reference Group Meeting: TBC
Data Manager Meeting:10th May 11:30am

The Australian Society of Gynaecological Oncologists (ASGO) 2021 Annual Scientific Meeting.

We will be at ASGO's annual meeting this year in Byron. We hope to see you there!

CONTACT US

Email: ngor@monash.edu | Phone: (03) 9903 0435 | 1800 432 213 |
Mail: Care of Natslie heriotLevel 2, 553 St Kilda, Melbourne VIC 3004

Academic Lead: Prof John Zalcberg
Clinical Lead: A/Prof Robert Rome
Registry Coordinator: Natalie Heriot | natalie.heriot@monash.edu
Research Officer: Alice Sporik | alice.sporik@monash.edu
Research Assistant (Ethics & Governance): Aleesha Whitely | aleesha.whitely@monash.edu
Research Assistant: Tran Nguen | tran.nguyen@monash.edu
Research Assistant (South Australia): Chelsea White | chelsea.white@monash.edu

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