Information for Participants
If you have received a letter of invitation and recruitment pack from the registry…
A person is eligible to take part in the NGOR if they:
- Are 18+ years old
- 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
In the future, we intend to include patients who do not understand written English. At this stage our patient information documents are only available in English, but we plan to have these translated into other languages later in the project.
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 a few key details such as a name and mailing address, so that we can send an invitation letter and an information pack.
Your health information will not be sent to the registry until after 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 on (Toll free) 1800 432 231, or speak to your doctor.
If you are interested in participating but have not received a letter of invitation…
Currently we are only including patients with newly diagnosed ovarian, tubal and peritoneal cancers who were diagnosed and/or treated at a participating hospital.
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.
We appreciate your interest in participating. If you would like, you can provide your gynaecological oncologist’s name and/or the hospital where you are receiving treatment to the Registry Coordinator and we will aim to add them to the registry during the next phase of expansion.
We will update this website as the registry expands to other health services, and includes mores gynaecological cancer types.
Eventually, we would like to be able 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 with these conditions.
What happens to your information when you participate in the registry…
If you have been invited to participate in the registry and you do not opt out, we will 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. All information will be stored in a secure database which is accessible to only a small number of registry staff, all of whom have been rigorously trained in privacy and confidentiality protocols.
We might contact you again in the future about completing some questionnaires. These questionnaires are under development and will be designed to find out about your experiences and your perception of the care you received.
Your health information will be used by the NGOR to generate reports for hospitals and clinicians, in publications, presentations, and approved research projects that request registry data. 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.
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.
Thank you for allowing us to use your medical information to improve care for women diagnosed with gynaecological cancers in the future.
Opting out of the registry
The NGOR is an opt-out registry. This means that you need to tell us if you do not want to participate. If we do not hear from you, we may start collecting information about your diagnosis, treatment and health outcomes. This may happen any time after two weeks from the date on the cover letter mailed to you.
There are two types of opt out:
- Partial opt-out
Allow the registry to receive data about your diagnosis, treatment and health outcomes but receive no further contact from the registry, including through questionnaires.
- Full opt-out
Request that the registry receives no information about your diagnosis, treatment and health outcomes, and receive no further contact from the registry. If the registry has already received your clinical information by the time you request a full opt-out, then this information will be deleted.
FREQUENTLY ASKED QUESTIONS (FAQ)
Why have I been invited to participate in the registry?
A participating hospital’s gynaecological oncology unit or your treating clinician will have identified you to the registry as someone who was recently diagnosed with a gynaecological cancer. If you are unsure of your diagnosis or you believe you were mistakenly invited to the registry, please call the NGOR Coordinator or speak with your treating doctor.
How did the registry get my contact details?
Either your treating gynaecological oncologist or a hospital you attended for care relating to your cancer diagnosis is participating in the registry, and has provided your name and mailing address to the NGOR team.
Please see the Participating Health Services and Hospitals page for a list of the gynaecological oncologists and hospitals that are involved with the NGOR.
Do I have to take part?
Participation in any research project is voluntary. If you do not wish to take part, you do not have to. This is an opt-out registry, this means that if you do not want to participate, you need to tell us. If you decide to take part, and later change your mind, you are free to withdraw from the registry at any stage. You can ask for your information to be deleted from the registry at any time, by calling 1800 432 231 (Toll Free) or sending an email to firstname.lastname@example.org
Your decision whether to take part will not affect your relationship with your treating hospital(s) or specialist(s).
What do I do if I have been invited, and want to participate?
If you have received an invitation letter and are happy for NGOR to receive information about you (i.e. you would like to participate), you are not required to do anything. You will be considered to be recruited two weeks after the date your invitation letter was sent.
If you decide to take part, and later change your mind, you can ask for your information to be deleted from the registry at any time.
What do I do if I have been invited, but do not want to participate?
If you do not want the registry to receive information about your diagnosis, treatment and outcomes, please contact the registry on 1800 432 231 (Toll Free) or email@example.com and quote your Office ID number (found on the invitation letter). Please indicate to registry staff if you would like to partially or completely opt out.
What is the purpose of this registry?
The NGOR collects information about diagnosis, treatment and outcomes of women with gynaecological cancers. This information is used to measure the standard of care provided by participating hospitals, and identify areas where improvements to treatment and patient quality of life can be made.
What does participation in this registry involve?
Participating in this registry has two parts:
1. Collection of information about your diagnosis and overall care
Your treating clinician or a database manager from the public hospital gynaecological oncology unit will send the NGOR information about your diagnosis, treatment and outcomes via a secure, password-restricted portal. Only relevant personal and health information will be collected. This includes:
- Your name, data of birth, address, hospital record number(s), Medicare number
- Test results related to your cancer
- Details of your cancer treatment
- Information about post-operative and intra-operative complications
- Treatment outcomes (e.g. unexpected re-admission to hospital post-surgery)
- Names of the hospital(s) and doctors who treat you
This information will be recorded in a secure database and only viewed by a finite number of registry staff trained in privacy and confidentiality, and who are experienced in working with and safeguarding sensitive health information.
You may be invited to participate in questionnaires about your symptoms and overall quality of care over the course of your treatment. Questionnaires may be completed online, by post or by telephone.
You may still participate in this registry even if you do not wish to participate in these questionnaires. Please contact the registry if you do not wish to receive these questionnaires.
How often will the registry contact me?
If you have been identified to the registry as an eligible participant, the NGOR team will send you a letter of invitation and an information booklet. In addition to this, you will receive a letter from the NGOR team about Ovarian Cancer Australia in the same envelope.
Ovarian Cancer Australia (OCA) is a patient advocacy group who are supporting the ovarian cancer pilot. The letter sent by the NGOR team about OCA is simply intended to inform you about the services and support available to you from Ovarian Cancer Australia. OCA does not receive any of your identifiable information from NGOR. This includes your name, personal details, medical information and decision to participate or not in the registry. And vice versa – if you contact OCA, they will not pass on any identifiable information to the NGOR team without your consent.
You should not receive anything else from the NGOR team until you are asked if you would like to receive questionnaires about your care. These questionnaires will not be sent to participants until after the pilot phase has been completed. You do not have to participate in these questionnaires, and you can still choose to participate in the registry even if you do not wish to do the questionnaires.
What are the possible benefits of participating in the registry?
The process of improving patient care for gynaecological cancers by comparing patient outcomes in this way is a long process. However, whilst you may not reap the benefits personally, it will help ensure that in the future, women across Australia will have access to the best possible treatments and care.
What are the possible risks of participating in the registry?
This registry does not involve any changes to the medical care you receive. You will continue to receive the same standard of medical care; we simply record what happens to you.
There is a risk that you may become upset or distressed when contacted by registry staff, or when completing one of the questionnaires. Remember at any time. You can choose not to complete the questionnaires and/or withdraw from the registry. If you are distressed you can contact Beyond Blue on 1300 224 636.
What will happen to information about me if I participate?
Your information will be used by the registry team to generate reports for hospitals, publications, presentations, and future research projects that require registry data. The information will be reported in such a way that you cannot be identified.
Any future research projects wishing to access registry data require approval from the relevant ethics committee(s) and the NGOR Steering Committee. Identifying information, such as your name and date of birth, will be included on the registry, but will only be disclosed with your permission (unless required by law).
How can I participate in the registry if I didn't receive an invitation?
The NGOR only collects data on newly-diagnosed gynaecological cancers at participating health services. If you have been diagnosed or treated for your cancer in one of these participating hospitals within the project time frame, and you are eligible to be in the registry, you will be sent an invitation by post.
At this stage, we can only enrol people in the registry who have received an invitation. However, the registry is currently working to expand to more Australian hospitals and to include all gynaecological cancer subtypes.
How will participating in the registry affect my care?
Your decision to participate or to opt out will not affect your care. Your doctor may be informed of your decision to opt out, but only to ensure that they don’t provide the NGOR team with further information about you. It will not affect how they treat you. If you have concerns, please speak to your doctor, contact the NGOR team, or call the patient support or Human Research Ethics Committee representative at your hospital. The appropriate site-specific contact details will be on the information booklet you received in the mail.
Participation in the registry should lead to improved care and outcomes for women diagnosed with gynaecological cancers in the future. Due to the nature of a clinical quality registry it will be some time before the benefits start to come into effect, so unfortunately you will not personally benefit from participation.
Are there any additional costs or reimbursements involved in participating?
There are no costs associated with participating in this research project, nor will you be paid.
I want to participate, but I’m not sure if I am eligible. How do I find out?
If you’ve been invited to participate in NGOR, then your case has been assessed by your clinician or a representative from the hospital where you are receiving care for your cancer diagnosis. If you’re still unsure, then you can speak to your doctor or contact the NGOR Coordinator.
INFORMATION ABOUT GYNAECOLOGICAL CANCERS
Fallopian Tube Cancer: Cancer Australia
Gynaecological Cancers: Cancer Australia