The National Gynae-Oncology Registry (NGOR) is a multi-modular clinical quality registry (CQR) which aims to record diagnostic, treatment and outcome data of patients with newly diagnosed ovarian, uterine, cervical, vulval, vaginal and other cancers of the female reproductive system in major participating gynaecological cancer treatment centres around Australia. Information from the registry will be used to monitor care provided to these women, including treatment received, complications and both short and longer term outcomes of this care. The data collected for the purposes of the registry will be used to help identify trends and whether gaps exist in service provision.
The NGOR will involve the collection of data to inform key clinical quality indicators (i.e. measures of ‘best practice’) and patient reported outcome measures (PROMs), documenting how such patients are treated in the real world and at a population level. This kind of data cannot be collected in a clinical trial.
The registry allow for comparison of variations in outcome and clinical practice across individual units, across the private vs. public sector and regional vs. metropolitan centres as well as facilitate national and international benchmarking against agreed best-practice.
Participants (NGOR Pilot)
Your patients are eligible to participate in the pilot phase of the registry if:
- They have been recently diagnosed with confirmed primary ovarian, tubal or peritoneal cancer (epithelial sub-types only);
- They were aged 18 years or older at diagnosis
- They were diagnosed within 3 months prior to, or any time after site research governance authorisation was granted (Contact the Registry Coordinator to find out if your site is approved, and the date of approval)
- They do not require an interpreter and you believe they can comprehend written English
- There is no evidence in their medical records/you don’t believe that they are or may be unable to recall their diagnosis or would be considerably distressed by an invitation to the registry due to dementia, acquired brain injury and/or mental illness
The registry is informed by pre-collected data from clinician driven clinical databases or hospital unit databases. Clinicians or unit data managers assess patients for registry eligibility, inform the registry and then send clinical information (i.e. an extract from the existing database) when the participant has been recruited.
If you are a gynaecological oncologist or a medical oncologist with a particular interest in gynaecological cancers, and are interested in participating in the registry, please contact the Academic Lead Professor John Zalcberg or the Clinical Lead Associate Professor Robert Rome.
If you don’t currently collect data on your gynaecological oncology patients, or have a unit database at your hospital you can still participate. Please contact the Registry Coordinator to find out more.
- Potential participants are identified by clinicians themselves, or their proxies (e.g. a unit database manager)
- The registry uses an opt-out approach for recruitment with a waiver of consent for deceased patients
- Participants are sent a Participant Invitation Letter and Participant Information Book. Participants or their proxy have two weeks from the date on the Participant Invitation Letter to opt-out before any of their health information can be sent from clinicians or unit database managers
- Participants can opt-out at any time and request their data be removed from the registry
- The registry collects secondary use data obtained primarily from pre-existing clinical databases from the time of diagnosis until the date of death or long-term cure
- The types of data collected includes: demographics, diagnostic information, and treatment information
- Quality indicators are specific to each module and are determined by the Steering Committee
- Patient Reported Outcome Measures (PROMs) will be developed and implemented, once the registry has matured. These are assessments of overall health and quality of life as reported by patients at specific time points after diagnosis
FREQUENTLY ASKED QUESTIONS (FAQ)
What are Clinical Quality Registries?
- CQRs systematically collect data on all episodes of care relating to a patient’s diagnosis of a particular disease (e.g. ovarian cancer), with the aim of improving patient outcomes through the assessment of the quality of care provided by healthcare institutions.
- Data are used to inform pre-determined, disease specific quality indicators (QIs) and participating sites are benchmarked against these QIs in regular reports.
- When outliers are identified, sites are responsible for investigating the cause and implementing changes where necessary.
Why is this project being conducted?
To improve population outcomes in newly diagnosed gynaecological cancer there is a pressing need to ensure that patients are assessed and diagnosed in a timely manner; that patients are treated in a manner consistent with best practice and that treatment outcomes are consistent with accepted benchmarking standards. One of the most basic tools needed to enhance outcomes for all gynaecological patients across Victoria is accurate, current real time data.
The appropriateness and effectiveness of care provided by sites and/or clinicians is evaluated as performance against quality indicators, and reported in a risk adjusted and benchmarked manner, in an effort to highlight any unwarranted variation in care and patient outcomes between hospitals and health services. By uncovering variations, CQRs prompt sites to re-evaluate how they provide patient care in relation to clinical guidelines, with increasing adherence guaranteeing minimal avoidable harm and improved patient safety.
What is a quality indicator?
Quality indicators are measures of adherence to ‘agreed best practice’. Quality indicators in the registry are based on published evidence and guidelines, and have been developed by the NGOR Steering Committee. If you would like a copy of our quality indicators for the pilot, please email the NGOR Coordinator.
Is the NGOR collecting Patient Reported Outcome Measures?
Patient Reported Outcome Measures will be developed and implemented, once the registry has matured. These are assessments of overall health and quality of life as reported by patients at specific time points after diagnosis.
Can clinicians access their registry data?
Clinicians contributing data to the NGOR can request their own data from the NGOR Coordinator, but they should bear in mind that the registry contains a limited data set and doesn’t generate new data (i.e. the source databases will contain more information and be more easily accessible).
Who is operating the NGOR?
- The NGOR is run by the Cancer Research Program (CRP) within the School of Public Health and Preventive Medicine at Monash University. The NGOR Academic Lead and Head of CRP is Professor John Zalcberg, the Clinical Lead is Associate Professor Robert Rome and the NGOR Coordinator is Ms Natalie Heriot.
- The development of the NGOR is overseen by a Steering Committee.
What types of data are collected?
The types of data collected includes: demographics, diagnostic information, and treatment information.
Please contact the NGOR Coordinator for more detailed information.
When will other gynaecological cancers be added to the registry?
At this time, only primary invasive epithelial ovarian, tubal and peritoneal tumours are being included in a pilot phase. Please check back at a later date for more information about future expansion to other tumour sites or contact the NGOR Coordinator for more information.