Participant Frequently Asked Questions
What do I need to do?
Active participation in the registry is voluntary, and can be withdrawn at any time. Participation is designed to be as minimally intrusive as possible, and data is collected from other sources to reduce the need for repeated information entry.
If you agree to participate, MelCOR will contact you up to 4 times a year and ask you to fill out a Patient Reported Outcomes Measures survey. This survey will allow MelCOR to assess patient outcomes on a population level, and directly identify potential variation across health services.
Why have I been invited?
A person is eligible for enrolment in MelCOR if:
- 18 years or older
- Recently diagnosed with a melanoma in a jurisdiction supporting MelCOR (currently Queensland and Victoria)
Most patients who meet these criteria will be contacted by their State Cancer Registry, and invited to participate in MelCOR. Initial contact can take several months from diagnosis.
All cancers in Australia are required to be notified to their relevant State Cancer Registry, with the information following routine reporting channels. No additional information beyond these channels is collected without your explicit consent.
If you believe you are eligible, would like to participate, and were not contacted by your State Cancer Registry, please get in touch with us either via email firstname.lastname@example.org or phone 1800 515 144.
How do I leave MelCOR?
If at any point you no longer want to participate with MelCOR, there will be a link on all correspondence allowing you to opt out. If you decide to do this, you will no longer be contacted by MelCOR. Regardless, you may contact us at any time to remove your consent.
If you’d like all your previously submitted and identified data to be deleted from our databases, please contact us directly, either via email at email@example.com or via phone 1800 515 144.
Who has access to my data?
Participant privacy and anonymity are the highest priority at MelCOR. Your identified data will only be accessed by MelCOR staff, and will be securely protected at Monash University. Before the data is reviewed or analysed, all identifying information is removed, ensuring participant anonymity.
Can my doctor access my survey responses?
Identified information submitted to MelCOR will not be released to any third party. All identifying information is kept strictly confidential until it is de-identified for data analysis.
Who’s funding MelCOR?
MelCOR is currently funded via the proceeds of previous national Melanoma Marches coordinated by the Melanoma Institute Australia and other partners. The Melanoma Institute Australia acts as custodian of the funds, but does not have input into the operations of MelCOR beyond its presence on the MelCOR Executive and Steering Committees.
I have further questions
Please feel free to get in touch with the MelCOR team. You can contact us either via email at firstname.lastname@example.org or phone 1800 515 144. We welcome any input, feedback or comments.
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