Q: Will I be better off in a study?
A: There are many advantages of being involved in research or in clinical trials. Depending on the study, these may include:
- Accessing programs, medicines or other treatments that are not available outside of the study and may be better than the current standard care for the disease
- Accessing expensive drugs that are not currently covered by the Pharmaceutical Benefits Scheme
- Seeing your treatment team, including specialists, more often
- Being motivated to take an active part in your health care
- Learning new ways to improve your lifestyle
- Improving your quality of life
- Feeling that you’ve tried all treatment possibilities
- Knowing you’ve made a valuable contribution to helping others in the future.
However, it is important to know that joining a study doesn’t always mean you will be better off than before or compared to other people in a similar situation. This is because although researchers may predict that the outcomes of their study will be positive, not everyone will respond in the way that they hope.
In a clinical trial, you may be in the control arm and not given the experimental treatment. If this is the case, you will receive the best standard care available and be monitored more frequently and closely than usual. Either way, your doctor and the clinical trials or research nurse will discuss the possible advantages for you before you join a study.
Q: What types of treatments are tested in clinical trials?
A: Clinical trials are an essential step to bring the results we see in laboratory research to real life improvements in health care. Clinical trials help us determine whether new approaches to cancer prevention, screening, diagnosis and treatment work better than those currently used, and whether they are safe.
There are several types of clinical trials, each designed to answer different research questions:
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Type of trials
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Explanation
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Prevention trials
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Evaluate whether medicines or health programs can lower the risk of developing diseases such as cancer.
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Screening trials
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Look at new methods of detecting disease before physical symptoms appear.
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Diagnostic trials
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Identify more accurate or less invasive ways of diagnosis a particular disease in people who have signs or symptoms.
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Treatment trials
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Test new treatments, new ways of giving treatments or new combinations of treatments including drugs (or systemic therapy), radiotherapy, surgery, nutrition, physiotherapy and complementary therapies.
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Quality of life trials
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Designed to improve the comfort and quality of life of people who have cancer.
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Q: Is participation free?
A: Generally the costs of participating in a clinical trial will be paid for by the organisation that is funding or conducting the research. For some trials this will include treatment, tests and patient check-ups. Travel or out-of-pocket costs may be refunded depending on who is sponsoring the trial. Ask your doctor if this is available. People who are not an Australian permanent resident or citizen will have to cover costs.
Q: How long will a study last?
A: From start to finish, a study often takes years or even decades. However, you may only need to be involved for some of this time. It may be a one-off couple of hours, or you may need to give a bit of time every few weeks, months or years. Some studies require people to be surveyed at regular intervals for several months or years. This allows researchers to understand the long-term effects of treatments, monitor the general health of study participants and collect data about long-term survival. Studies have what is known as a recruitment phase. This usually occurs over a few months or years until the required number of people have agreed to take part.
Q: Can I be involved in more than one study?
A: You may be interested in joining multiple studies. Check with the study coordinator whether you can participate in more than one study at the same time. If you can, think about whether you’ll be able to commit to the different requirements of each study, including the additional time involved.
Q: Will I be paid?
A: People participating in cancer research and trials don’t usually receive payment apart from reimbursement of out-of-pocket costs.
Q: Can I have other treatment if I go on a clinical trial?
A: This is different for every trial. Check with the study coordinator whether the trial you are participating in will have an impact on any other treatment that you are having or planning to have. This includes medicines for the symptoms or side effects associated with your cancer, as well as any complementary therapies such as herbal supplements or massage therapy. Ask your doctor if you need to stop or delay these other treatments, or whether they need to be modified (for example, changing the dose).
Q: Are clinical trials safe?
A: Clinical trials are the best way to test new treatments or to see whether a particular treatment works better than another. In Australia, all clinical trials have to be approved by a human research ethics committee before they can begin. This assures participants that their rights and any research benefits and risks have been carefully considered. Every trial is bound by law to follow a set of strict rules or guidelines, ensuring your safety.
Q: How can people living in regional, rural or remote parts of Victoria access clinical trials?
A: Clinical trials are available at hospitals throughout Victoria, including in rural or regional areas. Ask your doctor about the clinical trials available near you, or search for a clinical trial using the Victorian Cancer Trials Link website.
If you are unable to access a clinical trial that is close to home, speak to your doctor about travel and accommodation options. Some clinical trials are sponsored by pharmaceutical companies and may provide reimbursements for expenses associated with travel and accommodation.
Q: How can patients and their families access appropriate information about clinical trials, including trials available for their cancer profile?
A: The best person to speak to about participating in a clinical trial is your doctor. For tips on how to speak to your doctor about clinical trials read the Questions to ask your doctor factsheet that is available on the Victorian Cancer Trials Link website.
You can also search for a clinical trial using the Victorian Cancer Trials Link website by entering information about you, your cancer diagnosis and treatment history. If you are unfamiliar with this website, press the tour button in the top right corner of the homepage for instructions on how to search.
You may also consider speaking to one of Cancer Council Victoria’s experienced cancer nurses, who can assist with navigation of the website and can provide you with general information about clinical trials. You can contact a nurse by calling 13 11 20 or by submitting an electronic form on the Victorian Cancer Trials Link website.
Q: If I were to go on a trial and found the arm that I had been assigned to wasn’t what I wanted, would this affect my ongoing care or ability to join other trials in the future?
A: Clinical trials only test new treatments against current best standard care. You only get a placebo drug if no usual treatment exists. It is important to know that joining the arm that has the ‘experimental drug’ doesn’t always mean you will be better off than people enrolled in the control arm who receive standard care. Clinical trials are used to compare new treatments with what is currently used, so it is hard to know before the clinical trial which treatment will be better.
If you are uncomfortable with the arm that you have been assigned to, you are able to withdraw from the trial without consequence. It is important that you speak to your doctor and the person coordinating the trial about your reason for withdrawing from the trial, so they can help you make further decisions about your treatment and make any necessary adjustments to the clinical trial for future patients.