Dialog Box

Participant FAQs

What is a "Participant Information and Consent" Form?

The Consent Form will ask you if you would like to be approached again in the future by BioGrid Australia for certain options. There are 5 options for you to consider: you may choose yes or no for each level of consent depending on what you think is best for you. These options include consent for BioGrid Australia to contact your doctor to obtain your tumor pathology (histologic) report(s) or rare tumor predisposition report and other medical details to confirm tumor type or rare tumor predisposition type or to contact you to offer you participation in other ethically approved research projects studying your type of disease.

Once your signed consent form has been received by CART-WHEEL at BioGrid Australia, you will receive an automated email confirming this. If a suitable research study or clinical trial becomes available we will contact you.

What are the 5 options of consent?

Consent Option 1:

You will be asked if you give permission for BioGrid Australia to store your medical information as data in the Rare Tumor Database and for it to be used in a re-identifiable (coded) way, for example looking at how many patients with a particular tumor type or rare rumor predisposition we have information for and what are the basic characteristics of those patients.

Consent Option 2:

You will be asked if you give permission for your treating physician to enter, view or edit your data. You may still edit your own data, but if you consent for this option your nominated clinician will also have access to your data. Your data may help your clinician.

Consent Option 3:

You will be asked if you give permission for BioGrid Australia to contact you for an update of your personal information. This is to find out what has happened to you since you last gave us information. Again, this information would be stored and used in a re-identifiable (coded) way as in Option 1.

Consent Option 4:

You will be asked if you give permission for BioGrid Australia to contact your doctor to obtain your tumor pathology (histologic) report(s) or rare tumor disposition report and other medical details to confirm tumor type or rare tumor predisposition type. This is so that the information we store is as accurate as possible.

Consent Option 5:

You will be asked if you give permission for BioGrid Australia to contact you about the possibility of participation in other ethically approved research projects studying your type of disease. Such a study may ask you for more detailed information from you about your case; may inform you about a clinical trial that may be relevant for you; may request a blood sample from you if that is convenient (such a sample may have already been stored in one of the Tissue Banks in Australia or elsewhere); and may request permission to use a small part of any tumor tissue that has been removed in the past and has been examined by a pathologist for the presence of cancer (the tissue samples will only be used by researchers for ethically approved projects, and will only use excess tissue, not required for your pathologist to make your diagnosis).

What information will be on the CART-WHEEL database?

Identifying information

If you agree to participate in this study, we will record your name, date of birth, address and, if you reside in Australia, part of your Medicare number on the Rare Tumor Database. We will create a unique code for you. Only this unique code will be attached to your clinical information.

Clinical information

We will ask you for clinical data such as your age and where the tumor was in your body when you were first diagnosed with your tumor or tumor predisposition, how the diagnosis was made (eg what type of biopsy or genetic test was performed, what scans you had), who your doctors were at the time, general details about treatment you might have had, whether anyone in your family has had a cancer (as sometimes, but not always, this information is helpful for rare tumors). This information will be kept on a different computer database from your identifying information and identified only by your unique code.

Who will use my information and tissue?

Researchers who have applied to access the BioGrid website (by providing their professional details to BioGrid) will be able to view de-identified information from patients with tumor types or rare tumor predisposition in which they are interested. Only researchers who have approval from a Human Research Ethics Committee (HREC) and BioGrid Australia can request access to tissue samples.

HRECs, which are made up of doctors, lawyers, research scientists, community members and ethicists, ensure that projects are scientifically sound and are conducted according to the National Statement on Ethical Conduct in Research Involving Humans (2007) as issued by the National Health and Medical Research Council of Australia.

For what purpose will my tissue be used?

Tissue samples may be requested by scientists who are involved in various aspects of cancer research. Your tissue may be helpful for research into understanding the causes and processes that lead to your disease, and/or to develop improved methods for the detection, diagnosis, monitoring and/or treatment of your disease. This might include looking for changes in how cells function or how genes work. Researchers may want to look at differences in the tumor tissue and how they relate to processes leading normal cells to become cancerous, or how differences in the tumor tissue relate to how treatments work, providing better ways to predict the effects of treatment on the cancer cells etc. Researchers may want to study how diseases are passed on in families by comparing the genetic material (proteins and genes) present in both normal and affected cells; this is called genetic research.

Cells obtained from your blood or tissue may also be used to establish cell lines. A cell line consists of cells that are grown and kept for a very long time in the laboratory. Cell lines, therefore, allow the creation of a large supply of material for research. This allows material to be shared with other research groups and enables researchers to compare each other’s results. Only researchers who have obtained special approval can establish cell lines or perform genetic research.

How will my privacy be protected?

BioGrid Australia is structured so that participant identifying and clinical information are always kept separate. Researchers never receive information that would enable the researchers to know the identity of the people involved in the research. Thus researchers can conduct research while participant privacy is fully protected.

The data will only be available in coded form, your name and other identifying information will not be available to researchers. All data will be stored in a password protected secure computer facility at Melbourne Health. The only people who have access to the codes are two database administrators who do not have access to your health data.

Any information obtained in connection with this project and that can identify you will remain confidential. It will only be disclosed with your permission, except as required by law. Further information on data security of the CART-WHEEL database is available on the website.

How do I know that my information and tissue will be used in a way I would want?

For a researcher applying to gain access to the database, the following requirements will be essential:

  • The researcher must demonstrate that there are adequate resources, including funding, to complete the project satisfactorily. That will usually mean that there is a research grant, which means in turn that the project has been subject to strict scientific scrutiny. The project must have been examined by appropriately qualified scientists and judged to be of good scientific merit.
  • The Human Research Ethics Committee of the researcher’s hospital, university or institution must have approved the project.
  • When these requirements are satisfied, a decision as to whether to grant access to the Rare Tumor Database will be made by BioGrid Australia, which is ultimately responsible for the proper maintenance and use of the database.

It is possible that information about the study might be published. However, no information that might identify you will appear in these publications.

In accordance with relevant Australian and/or Victorian privacy and other relevant laws you have the right to access the information collected and stored by the researchers about you. You also have the right to request that any information with which you disagree be corrected. Please contact one of the researchers named below if you would like to access your information.

Since this database can help research, which by its very nature, is experimental and can take many years your data will be kept indefinitely unless you choose to notify the researchers that you wish to withdraw your data from the project.

If your question is not listed here, 
Please send us an email with your question to contact@cart-wheel.org.

Start Questionnaire Information Brochure Consent Forms