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									           The NSW Cancer, Lifestyle and
       Evaluation of Risk (CLEAR) Study
   CLEAR, Reply Paid 79819 Potts Point NSW 1335.
          Study Call Centre 1 800 500 894
    Information for participants
                 without cancer
         You have not received this information sheet because you have cancer. This leaflet is
         about a health study in NSW. If, after reading it, you would like more information,
         please telephone our freecall number 1800 500 894, or email CLEAR@nswcc.org.au

Purpose of the study
New South Wales is one of the most cosmopolitan communities in the world. This will be the first study to
comprehensively examine the factors that might lead to cancers in the NSW population.

There are many aspects of our lifestyles that may predispose us to developing cancer, and many of these
are not well understood. The NSW Lifestyle and Evaluation of Risk Study aims to assess such factors, and
see if they differ in various groups within our multicultural community. By taking part in this study, you will
help the researchers at the Cancer Council NSW better understand the causes of cancer. Information
provided by participants without cancer will be compared with information provided by participants who
have been recently diagnosed with cancer.

Who is conducting the study?
This study is being conducted by the Cancer Epidemiology Research Unit at The Cancer Council NSW.

What does participation in the study involve?
Participation in this study requires you to complete a confidential questionnaire, which includes questions
about your previous medical history, lifestyle, diet, family, and use of medications. This should take on
average about 30 minutes.

With your agreement, we will also obtain a sample of your blood for analysis, at a place and time
convenient to you. We also ask your permission to obtain dental records from your dentist. As a part of the
study, the researchers will also obtain information on the date and circumstances surrounding death for
any participants who pass away during the years in which the project is ongoing. You have the option to
participate in the study without providing the blood sample or dental records.

Participation in this study is entirely voluntary and will be at no cost to you.

What will the researchers do with your blood sample?
Providing a sample of your blood will allow the researchers to look at the association between certain genes and
cancer, to assess certain aspects of lifestyle, and to study the influence of infectious agents (viruses or bacteria)
that might be associated with the development of cancer. It is important to understand that because this is a
research study, the influence of many of these genes and other factors is not well understood, and these tests are
not used routinely in people outside of the study. Therefore, in cases where the medical significance is not
established, the results of the test will not be communicated to you. In some cases, the medical significance of
the tests performed on your blood will already be understood, and in these situations you will have the option to
have the results communicated to you. Examples of the types of tests where this applies include tests for
infectious agents such as hepatitis or HIV. You can contact the researchers at any time to request that your
sample is not used for further testing and in that case the sample will be destroyed.

The Human Research Ethics Committee of the Cancer Council NSW will be informed of all tests to be done
on the blood samples.

How will your privacy be protected?
When you fill out a questionnaire and consent to donating a sample of blood, your privacy will be protected
in the following ways:

Information Sheet for Participants without Cancer                                                        Page 1 of 2
Version 2, 24 August 2006
Control RHW, StV, CC, POW, SEC
     Your questionnaire and sample will be labelled with a unique number, not your name, and will be
        stored securely in locked files and cabinets.
     Any identifying information (your full name, address, your consent form, etc.) will be stored
        separately from the sample and information you provide.
     Access to this identifying information will be restricted to a small number of senior members of the
        study team, who have signed agreements to protect your privacy and confidentiality.
     No information that could be used to identify you or your family will be included in any report on the
        results of the study.

Will you find out the results of the research using your blood?
We will be storing the blood samples so that they can all be tested together towards the end of the study.
Therefore, it may be up to five years before your results are available. If there are results that may be
important to you, we will inform your doctor or a genetic counsellor, who will contact you.

You can sign up to receive newsletters about the study, which will provide you with information about the
progress. You can also contact the Study Team at any time on 1800 500 894 if you have questions.

Future research using your information and samples
After we have finished this particular study we will keep the information and remainder of the sample that
you give us for an indefinite period.

More questions about the study
If you have further questions about the study please contact the study call centre on 1800 500 894.

The study has been approved by The Cancer Council NSW Research Review Committee and The Cancer
Council NSW Ethics Committee. Research and Ethics committees ensure studies are performed to the
highest scientific standard and in such a manner that the privacy, sensitivities and rights of each person
participating in research are protected.

What if you do / don’t want to participate in the study?
Participation in the study is entirely voluntary. If you would like to discuss your participation with one of the
study staff, please contact the study team on 1800 500 894.

If you choose to participate, your contribution will provide important information to help identify risk
factors for cancer in the people in New South Wales. If you would like to participate, you need to fill in the
consent form and complete the questionnaire and return them in the reply-paid envelope provided. Please
do this at your earliest convenience.

If you prefer not to participate, please tick the box “No” on the consent form and return it in the reply-
paid envelope provided. If you do not return the form, we will try to contact you again to see if you are
interested in participating. At that time you can ask any questions you wish and decide if you want to be
involved or not.

Can you withdraw from the study once it has started?
You may withdraw from the study at any time. If you have agreed to participate and have completed the
questionnaire, you can still change your mind later. Just contact us (contact details below) and we will
destroy the data from your questionnaire and your blood sample.

How do you contact the study team?
NSW CLEAR Study                          Postal address:               Study Call Centre 1 800 500 894
Cancer Epidemiology Research Unit                     CLEAR            Fax: (02) 8302 3550
The Cancer Council NSW                          Reply Paid 79819
153 Dowling Street                            Potts Point NSW 1335.    Email: CLEAR@nswcc.org.au
Woolloomooloo                                                          Website:www.cancercouncil.com.au/CLEARstudy
Sydney NSW 2010

Information Sheet for Participants without Cancer                                                        Page 1 of 2
Version 2, 24 August 2006
Control RHW, StV, CC, POW, SEC

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