Newsletter #8
December 2021
You are receiving this email because of your association to the National Gynae-Oncology Registry, Monash University. The NGOR would like to say a huge thank you to all the clinicians, data managers, other personnel who are involved in this project and to those who support us. We would also like to express our sincere gratitude to the women diagnosed with gynaecological cancers and their families for their contributions, without which the registry would not be possible.

The NGOR Operational Team would like to wish everyone a very happy and relaxing festive season. We hope you are able to spend it in good health with your loved ones and we wish you a very happy new year. 

Thank you again to everyone who helped the NGOR to thrive in 2021 despite the difficulties COVID-19 placed on us. It has been amazing to watch the registry develop and achieve so much. 

I (Natalie) would also like to express my immense gratitude to everyone I have worked with over these past five or so years. The registry has been a privilege to work on, and I am extremely grateful to each and every person I have had the pleasure to work with and learn from over this period. I will miss you all and I wish you the best for the future. 

All the best,
Natalie, Alice, Aleesha, Tran, Emily and Tahlia

A letter from our Clinical Lead A/Prof Robert Rome
2021 has been a busy and challenging year despite which the NGOR has progressed on several fronts.

Patient accruals: It is especially gratifying to see high accrual numbers for Ovarian and Endometrial Cancer.

Ovarian, Tubal & Peritoneal Cancer Module: Accrual of patients with ovarian, tubal and peritoneal cancer is continuing. There have been some problems with data relating to surgery which were raised by data managers. These are being addressed.

Endometrial Cancer Module: The Endometrial Cancer data has been field-tested and a small series of 80 consecutive patients from 2 institutions was presented at the Epworth Research Week which demonstrated what clinical quality registries can do. Accrual of patients with Endometrial Cancer is continuing and the registry will be contacting you to seek your participation.

Cervical and Vulvar Cancer Modules: The clinical indicators have been finalised by the Working Groups and will be circulated to the clinical participants. The rationales, numerators and denominators are being defined and will be circulated in the New Year. The relevant datasets are being drawn up and we will be seeking interest from units to participate in field testing these Quality Indicators (QIs) and datasets. To view the cervical and vulvar cancer QIs click here

Structured Surgical Reports: We would like to ascertain if there is interest in progressing this. These will facilitate the collection of surgical data in a standardised format in much the same way that the pathologists do with their synoptic reports. If they are agreed upon and introduced, they will assist data managers and the registry and facilitate surgical research. It will require goodwill and compromise, but I do not think that it is an impossible task. You would no doubt have seen the SSR developed by ESGO for ovarian cancer and published in 2016 which is referenced below.

Collaboration with the Dutch Institute for Clinical Auditing: The Dutch are interested in seeing if there is interest in working towards internationally agreed QIs for gynaecological cancers. This project will address ovarian cancer in the first instance. We have indicated our interest in participating in this project.

Could I draw your attention to the latest FIGO Cancer Report 2021 released in October which contains some important changes to the staging of Cervical and Vulvar Cancers.

I would like to thank the Working Groups for their efforts in progressing the NGOR during difficult times. I am especially grateful to the NGOR operational team for their tireless and expert registry management and development support.

NGOR Coordinator Natalie Heriot will be finishing up with Monash University at the end of this month to take on the position of Registry Manager at Ambulance Victoria. Natalie has been the coordinator of the NGOR since its inception in early 2017 and has played a significant role in establishing and managing the registry. Natalie will continue to be involved in the OvCR in her role as Associate Investigator on the MRFF grant and will support the broader NGOR on a casual basis until her replacement can be found. Expressions of Interest (EOIs) are being sought for her role. Details can be found in this newsletter under the subheading 'Staff Updates'. 

Best wishes for Christmas and the New Year. May 2022 be better than 2021!

Robert Rome

Important References
ESGO guidelines for Ovarian Cancer Surgical Reporting (2016)
ESGO/ESTRO/ESP Guidelines for the Management of Patients with Endometrial Carcinoma (2021)
To date, more than 1370 women with ovarian, tubal & peritoneal cancer (OTP) have been recruited to the NGOR from 20 health services/hospitals. 

That's an increase of over 600 participants this year alone!
To date, more than 1000 women with endometrial cancer have been recruited from 9 health services/hospitals.

This is an enormous achievement as the Endometrial Cancer module only launched this year!
The Endometrial Cancer Module has only launched in Victoria and Tasmania. 
Rare Ovarian Tumours Module
The Rare Ovarian Tumours Module recently began its pilot phase and more than 90 participants have been recruited thus far. The current database is based on a "minimum data set" that was developed in conjunction with clinicians, consumer representatives and other stakeholders who sit on the MRFF OvCR Rare Tumours Committee, and the data collected through this pilot will be used to develop a set of clinical quality indicators in due course.

Women recruited in the Rare Ovarian Cancer Module in 2021
Cervical Cancer Module: A draft set of Quality Indicators are out for review to the Working Group after receiving feedback from the Cervical Cancer Elimination project and the NGOR's Steering Committee. We anticipate piloting this module in 2022.

Vulvar Cancer Module: A draft set of Quality Indicators have been sent to the wider Steering Committee for review and are close to being finalised.
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 mental health or memory related issues. The
language exclusion criteria has been removed, so please send through any patients who would have previously been excluded.

Until the end of January 2022 please prioritise sending eligible Endometrial Cancer patients to the registry (Victorian sites only). The registry's no. 1 priority otherwise continues to be the recruitment and collection of data on eligible patients with ovarian, tubal and peritoneal cancers (all subtypes - epithelial and rare).
The second OTP Quality Indicator report is expected to be released in early 2022. It will include data from the start of the Registry in mid-2017 to the end of 2020.
Patient Reported Outcomes Measures (PROM) & Patient Reported Experience Measures (PREM) Module

Thank you to Prof. Penny Schofield, Alice Sporik, Sharnel Perera, Ovarian Cancer Australia, our consumer representatives Jan and Kristin and the rest of the hardworking PROMs Reference Group who have dedicated a large amount of time and effort to the planning and preparations of the upcoming PROMs module. Special mention of Prof. Madeleine King for her expertise and support in the lead up to her retirement. 

37 health services engaged with 
 20 actively recruiting. 
Click to see the complete list of health services & hospitals
Please contact the NGOR team if you would like your health service or hospital to be included in the registry.
CERVICAL CANCER ELIMINATION PROJECT: The NGOR was mentioned in The Cervical Cancer Elimination Project 2021 report. Click HERE to view the full report. 

DUTCH INSTITUTE FOR CLINICAL AUDITING: The registry has collaborated with the Dutch Gynaecological Oncology Audit in the preparation of a manuscript titled providing an Overview of Gynaecological Oncological Clinical Quality Registries worldwide.
SCOTTISH CANCER TASKFORCE: Contact with the Scottish Cancer Taskforce was established earlier this year. The NGOR hopes to learn from the Scottish learnings as a more matured registry.

VICTORIAN CANCER REGISTRY: The NGOR is engaging with the Victorian Cancer Registry on a study looking at staging data from the registry's Ovarian & Endometrial Cancer Modules.
Departing Staff: Natalie Heriot
It is with great sadness we are announcing Natalie Heriot's departure from Monash University after 7 years with the Cancer Research Program and 5 with the NGOR. She will remain involved in the project as an Associate Investigator on the MRFF OvCR grant, and in a supportive operational capacity until her replacement has been found. We want to wish her good luck with her new role as Registry Manager with Ambulance Victoria!

With Natalie Heriot's departure from her role as Registry Manager, the NGOR is seeking EOIs for her replacement. Please email Natalie or John to find out more about the position, their email addresses can be found at the bottom of this newsletter. 
New staff: Emily Holding
Emily completed a Bachelor of Arts at Monash university in 2019, while working as a volunteer at the Victorian Women's Trust throughout her studies. She then worked for one year at Cancer Council Victoria, before joining the cancer research team at Monash SPHPM as an Administrative Assistant in 2020. With experience in registry administration and a keen interest in women's health, Emily has now joined the NGOR team to provide administrative support.
New staff: Tahlia Knights
Tahlia recently graduated from a 4-year undergraduate Health Information Management degree with La Trobe University during which she spent her final workplace placement with the NGOR. Tahlia is now part of the NGOR operational team, developing standard operating procedures for registry operations, supporting data collection and leading efforts into real-time reporting and monthly clinician and data manager summaries 
The NGOR operational team would like to acknowledge and thank all the students who worked with us throughout 2021, including Health Information Management students from LaTrobe Univeristy, MD Scholarly Intensive Placement students from Monash University and others. We look forward to welcoming several new students in 2022 including PhD student Dr Mahendra Naidoo, Honours student Jessica Ravindran, two students who were awarded Cabrini Medical Staff Research Scholarships and a student from Warwick Medical School.

We have had a number of students working with the NGOR this year, with a special mention to Lauren Friskin who researched 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. We have a number of new students joining us in 2022!
If you are interested in collaborating or studying with the NGOR, please get in contact with us
Endometrial Cancer: Alison Brand, Orla McNally
Cervical Cancer: Selvan Pather
Vulva-Vaginal Cancer: Geoff Otton
Rare Ovarian Tumours:
Yeh Chen Lee
PROMS: Penelope Schofield
Data Linkage: Penny Webb
Site Expansion: Rhonda Farrell
Email:  | Phone: (03) 9903 0435 | 1800 432 231 | 
Mail: Natalie Heriot Level 5, 553 St Kilda Road, Melbourne VIC 3004

Academic Lead: Prof John Zalcberg 
Clinical Lead: A/Prof Robert Rome
NGOR & OvCR Coordinator: Natalie Heriot |
Project Manager (PROMs): Alice Sporik |

Copyright 2021 National Gynae-Oncology Registry, All rights reserved.

The National Gynae-Oncology Registry would like to thank Ovarian Cancer Australia, the CASS Foundation, Medical Research Future Fund, 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 5, 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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