FAQs

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What is the aim of the study?

Women diagnosed with ovarian cancer often ask what they can do to help beat the disease or stop it coming back. At the moment the only answer is that we don’t know. We are doing this national study to try to find out how lifestyle choices may help women with ovarian cancer. We want to enroll about 1,200 women in the study to see if factors such as physical activity, diet and common medicines influence quality of life and outcomes in women with ovarian cancer. If you take part you will help us develop information for women with ovarian cancer and their families in the future.

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What will being in the study mean for me?

Being in the study will involve the following steps:

• Completing an interview and questionnaires every 3-6 months for up to two years:

-- At the time of your diagnosis, or as close as possible to this time, we would like to ask you about your general health, lifestyle and well-being. This interview will be done in hospital or somewhere convenient to you, or by telephone and should take about 30 minutes.
-- At this time we will also give you a separate dietary questionnaire that will take about 20 minutes to complete.
-- Every 3-6 months after this we will send you another questionnaire to collect information about your current lifestyle and quality of life.

• Giving permission for the research staff doing the study to access your medical and pathology records (including tumour material).

• Giving two small blood samples (about 30ml or 2 tablespoons). We will ask you to give the first sample close to the time of your diagnosis with cancer and the second sample about one year later. You can still take part in the study even if you do not wish to give a blood sample.

There will be no direct benefit to you from taking part in the study however the results of the study may help women diagnosed with ovarian cancer in the future.

There will be no cost to you and if you do not want to take part this will not affect your future medical care in any way. You will also be free to withdraw from the study at any stage.

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When will the results of the OPAL study be available?

Results will not be available until 2018 at the earliest. This is because we have to follow the women taking part in the study for several years before we can draw any conclusions about how lifestyle affects ovarian cancer outcomes.

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How will my privacy and confidentiality be protected?

• All your questionnaires and samples will be labelled with a unique study number instead of 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.
• No information that could be used to identify you will be included in any reports from the study.

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Will I find out the results of the research using my tissue or blood?

The results of research done with your tissue or blood are not likely to be available for several years. This is because research can take a long time and must use samples from many people before the results are known. We will not be able to give you the individual results from your samples but everyone who takes part in the OPAL Study will be sent regular updates to let you know how the study is going. You can also contact the Study Team at any time if you have any questions about the study. In exceptional circumstances, when we believe that the information we have will be very important for your health or that of your close relatives, we may contact you about this. In this situtation we would advise you to seek help from an appropriate health professional.

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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.

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What if I have more questions about the study?

If you have any questions about the study, please call our free OPAL Helpline on 1800 222 600, email us at opalstudy@qimrberghofer.edu.au or contact:

Sue O’Brien (Project Manager) (07) 3845 3541

Associate Professor Penny Webb (Chief Investigator) (07) 3362 0281

If you have any concerns or complaints about the conduct of this study or would like to speak to someone who is not involved in the study you can contact:

The Chairman of the QIMR Berghofer Medical Research Institute-Human Research Ethics Committee by phoning the Secretary on (07) 3362 0117.

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