How will my privacy and confidentiality be protected?
When you fill in a questionnaire or donate a sample of blood or tissue to this study we will make every effort to protect your privacy.- All your questionnaires and samples will be labelled with a unique study number, not your name. This is so they cannot directly be identified as having come from you but also to make sure that they do not get confused with questionnaires or samples from someone else. Any data that we generate during the study will also be labelled with this unique code to ensure confidentiality.
- Any identifying information (your full name, address etc.) will be stored separately from the samples and information you provide. Access to this identifying information will be restricted to a small number of senior members of the study team, and it will not be passed on to other researchers, or other parties.
- No information that could be used to identify you will be included in any reports from the study.
Can I withdraw from the study?
You can withdraw from the study at any time and this will in no way affect your medical treatment in the future. Also, if you decide now that your tissue and blood can be kept for research, you can still change your mind later. Just contact us to let us know you want to withdraw.
If you choose to withdraw, we will discuss with you whether you wish your information and/or blood and tissue samples to be destroyed or whether we may continue to use them.
Future research using your information and samples
After we have finished this study we will keep the information and any blood or tumour samples that you give us indefinitely. This is because they are very valuable and may help us answer other new questions about cancer in the future. We may also match your personal data against other health registers. Your information and samples will be stored safely at QIMR Berghofer and only authorised staff will have access to them. They will be identified only by your unique study number and will be stored separately from your name and other identifying information.
If you do not want your material to be used for other studies it will not affect your participation in the main OPAL Study or your future medical care.
