Information for Participants
A person is eligible to take part in the NGOR if they:
- Are 18+ years old
- Have been recently diagnosed with ovarian, tubal, peritoneal or endometrial cancer
- Were diagnosed or received treatment for their cancer at a hospital that is participating in the NGOR
Staff at the hospital where treatment is being given decide whether a patient is suitable to be invited to the registry. If they consider a patient to be suitable, they send the registry some key details such as a name and mailing address, so that we can send an invitation letter and an information pack.
To all of our registry participants, thank you for allowing us to use your medical information to improve care for Australian women who will be diagnosed with gynaecological cancers in the future.
If you have received a letter of invitation and recruitment pack from the registry…
Your health information will not be sent to the registry until after you have had time to consider your participation and you are considered to be recruited.
If you have received a letter from the registry inviting you to participate and you wish to know more, you can read more about the registry on this website, contact NGOR staff at Monash University either by email (email@example.com) or by calling the toll free number 1800 432 231, or speak to your doctor.
What happens if you participate in the registry…
If you have been invited to participate in the registry and you do not opt-out:
We may collect information about your diagnosis including whether you received all the expected tests and treatments for your condition, when you received them, whether you experienced any complications from surgery, and how your health is changing over time.
We may contact you again in the future to ask whether you might complete questionnaires about your experiences and your perception of the care you received. If you do not wish to be contacted by the registry but would like to contribute your health data, please let us know by emailing at firstname.lastname@example.org or calling the toll free number 1800 432 231.
If you are interested in participating but have not received a letter of invitation…
If you have been diagnosed with a gynaecological cancer and are interested in participating in the registry, or you wish to find out more, please contact NGOR staff using the contact information provided on the Contact us page.
If you provide your gynaecological oncologist’s name and/or the hospital where you are receiving treatment the registry team will endeavour to obtain the necessary approvals to allow you to participate. As the registry expands, we will update this website to include all participating health services and hospitals.
The registry aims to invite all women in Australia with recent diagnoses of all gynaecological cancers to participate, so that we can compare care between different states and territories, and help to improve quality of care for all Australian women diagnosed with gynaecological cancer.
What happens to your data…
All data collected by the registry is stored in a secure password-protected database. Access to this data is restricted to a small number of registry staff, all of whom have been rigorously trained in privacy and confidentiality protocols.
Information collected by the NGOR will be used to generate reports for hospitals and clinicians for the purposes of supporting improvements in quality of care provided to women with gynaecological cancers and improvements in their outcome. Health professionals and researchers will use the information to ensure hospitals and other health care services are providing the most thorough and effective care for women with gynaecological cancers.
Data will also be used in publications, presentations, and approved research projects that request registry data. Please note that all data is kept secure and confidential. The information will be reported in such a way that you as a participant, cannot be identified. Your information will only be reported as part of grouped statistics for the hospital, without any details that could identify you, unless your express written permission has been obtained, or in the unlikely instance that we are required to under Federal or State law.
INFORMATION ABOUT GYNAECOLOGICAL CANCERS
Fallopian Tube Cancer: Cancer Australia
Gynaecological Cancers: Cancer Australia
Useful Websites about NGOR and Clinical Quality Registries
Gynaecological Cancer Support Networks and Patient Advocacy Groups
MONASH CONSUMER ADVISORY GROUP – Call for Expressions of Interest
Are you a passionate individual who wishes to make informed contributions to the improvement of the quality of care for patients with cancer?
If yes, and you have had an experience with cancer as a patient and/or carer then we would like to hear from you!
Please consider joining the Monash Consumer Advisory Committee.