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 do 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. 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.