Information for Participants
Why have I been included?
A person is eligible to take part in the ANZTCR if they are:
- A newly diagnosed patient with a confirmed primary thyroid cancer
- Have been diagnosed or received treatment for the cancer at a participating health service/district
- 16 years or older at the time of diagnosis
Potential participants are identified by surgeons providing treatment for the eligible cancer.
Participation in this thyroid cancer registry is voluntary, you will be invited to participate by letter. Participation has two parts:
1. Collection of information from medical records
Surgeons will collect relevant personal and health information regarding your thyroid cancer, from your medical record. This includes: name, date of birth, contact details, diagnosis details, surgery details, test results related to the cancer and other treatment details.
You may be invited to participate in questionnaires about your symptoms and overall quality of care, over the course of your care. Questionnaires may be completed online via email or SMS.
Your information is stored securely at Monash University and will be used by the ANZTCR to generate reports for hospitals, publications, presentations, and future research projects that request registry data. The information will be reported in such a way that you cannot be identified.
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 patients with thyroid cancer, with a view to improving patient outcomes.
IF YOU WISH TO BE EXCLUDED FROM THE REGISTRY
The ANZTCR 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 you. This may happen any time from two weeks after the date on the invitation letter mailed to you. You can opt-out of the registry at any time. If you choose to opt-out after data collection has started we can delete any information that has been collected about you for the registry.
There are two parts to participating in the registry and you can choose which parts you would like to opt out of:
- I do not want to be contacted to complete questionnaires (Partial Opt-Out)
This means you do not want to answer any questionnaires but you are happy for surgeons (and/or their staff) to collect important information from your medical record to help hospitals improve the care they give to people with thyroid cancer.
- I want to opt-out of the whole registry (Full Opt-Out)
This means you do not want to answer any questionnaires and you do not want information collected from your medical records. The registry will keep some key pieces of information in order to avoid sending another registry invitation letter to you in the future.
FREQUENTLY ASKED QUESTIONS (FAQ)
Why have I been included?
Your surgeon has identified you as having being diagnosed with thyroid cancer. If you are unsure of your diagnosis, please speak with your treating doctor.
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 send an email to email@example.com
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, but do not want to take part?
If you do not want the registry to collect information from your medical record, please contact the registry, on 1800 432 231 (Toll Free) or firstname.lastname@example.org
What will happen to information about me?
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 ANZTCR 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.
What do I do if I have been invited, and want to participate?
If you have received a Participant Invitation Letter and are happy for the ANZTCR to collect your data and would like to participate, you are not required to do anything. You will automatically be recruited two weeks after the date your invitation letter was sent.
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.
What is the purpose of this registry?
The ANZTCR collects information about diagnosis, treatment and outcomes of individuals with thyroid cancer. This information is used to measure the quality of care provided by hospitals and report on areas that could be improved.
What are the possible benefits of taking part?
There will be no direct benefit to you from participating in this registry. The process of improving health care systems by providing hospitals with their quality of care data, takes a long time. This work is expected to benefit people diagnosed with thyroid cancer in the future.
What are the possible risks of taking part?
This registry does not involve any changes to the medical care you receive. You will continue to receive the standard 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 that you can choose not to complete the questionnaires or withdraw from the registry at any time. If you are distressed you can contact Beyond Blue on 1300 224 636.
What does participation in this registry involve?
Participating in this registry has two parts:
1. Collection of information from medical records
Surgeons will collect information from your medical records. Only relevant personal and health information will be collected. This includes:
- Your name, data of birth, address, phone number(s), email address, hospital record number(s), medicare number
- Diagnosis details
- Surgery details
- Test results related to your cancer
- Other treatment details
To make sure all the essential information has been collected, your medical records will be reviewed at 90 days post-surgery. This information will be recorded in a secure database.
You may be invited to participate in questionnaires about your symptoms and overall quality of life, over the course of your care. Questionnaires may be completed online, by post or 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 be contacted about these questionnaires.
Are there any additional costs or reimbursements involved in participating
There are not costs associated with participating in this research project, nor will you be paid.
How can I participate?
The ANZTCR is currently only collecting data on thyroid cancer, at participating health services. If you have been diagnosed or treated for your cancer in one of these participating hospitals within the project timeframe, 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 expanding to include more Australian and New Zealand hospitals.