Australian Cancer Trials
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Information about clinical trials
Overview
Taking part in a clinical trial or research study may involve extra appointments, tests and check-ups to help researchers learn more about your health and how the treatment is working. It is important to follow the study instructions and let the research team know about any side effects or changes in how you are feeling. The research team will support you throughout the study.
Some studies continue to collect information after they finish to help researchers understand the long-term results.
You can leave a clinical trial at any time and continue to receive standard treatment.
What's on this page
Your role in the trial or study
What you need to do when you agree to join a clinical trial or other research study depends on what kind of research it is. Some studies need preparation and ongoing follow-up, others involve a single visit or just a survey. Your participation is usually organised by one person (often a clinical trials or research nurse or research assistant), but you may come into contact with different members of the research team.
Finding out about the trial
Finding out about the trial
- Your cancer specialist may suggest a trial to you, or you may find a trial through your own research.
- Discuss the trial with a member of the clinical trials team and your cancer specialist. You may also choose to see another specialist for a second opinion.
Checking you are eligible
Checking you are eligible
- Answer some questions about your medical history and have a physical examination and any required tests, such as a CT scan and blood test, to check that the trial is suitable for you. This is known as screening.
- Once the clinical trials team has these results, they will let you know if you have been accepted into the trial.
Deciding to join
Deciding to join
- Read the participant information. You may want to discuss the information with family, friends or your GP.
- Ask the trials team any questions you still have about the study, including questions about safety, side effects, financial issues, number of visits and timing (see this list of suggested questions).
- If your questions have been answered and you agree to take part in the trial, sign the informed consent form.
What to expect
What to expect
- Expect that you may have less flexibility on the trial than you would with standard cancer care – for example, you may need to have blood tests or treatment on particular days. This may mean you need to adjust your work schedule or childcare arrangements more than you would if you were not involved in the research.
- Be prepared for more tests and visits to your doctor than you would normally have. This is to monitor your health and to see if and how the treatment is working.
During the trial
During the trial
- Follow the instructions you are given about the trial – that means going to all appointments, having the required tests, taking medicines at precise times, and completing logs, surveys or interviews. This will help make the trial results as reliable as possible.
- Tell the research team about any side effects you are experiencing. The research team will ask about how you are feeling emotionally and physically.
After the trial
After the trial
- Researchers may stay in contact with you and ask follow-up questions for some time after the trial. This will give them long-term information on how you responded to the trial.
- You may return to having the standard care and/or check-ups and tests that are appropriate for you, depending on the stage of the cancer and what your cancer specialist recommends. In certain circumstances, you may be able to keep having the trial treatment.
Communicating with the treatment team
- Keep contact details handy in case you have questions before, during or after the trial or study.
- If your clinical trials team has given you a participant card, keep this with you and show it to any other health professionals you see.
- If you join a clinical trial at a different hospital to the hospital where you started cancer treatment, you may have two treatment teams. In this case, make sure your medical information and any relevant test results are available to both treatment teams, and ask who your main contact person is.
- If you are in a trial and develop new or worsening symptoms, let your clinical trial and cancer care teams know immediately. If the symptoms are serious, go directly to your hospital’s emergency department and/or contact the oncology registrar at the hospital. It is important to tell the hospital you’re in a clinical trial and show them the participant card if you have one. If you go to hospital, let your clinical trials team know.
Continuing the treatment
Many people wonder if they can keep having the experimental treatment after a trial is over.
This depends on several factors, such as:
- the trial phase and results
- how effective the treatment was for you
- what the recommended course of treatment is
- whether the trial sponsor is prepared to continue providing the treatment.
Some people join clinical trials to get treatments that are not available anywhere else. It can be frustrating to have to stop a treatment after the study ends. When a trial shows that the experimental treatment works and has no major side effects, the treatment can sometimes be continued after the trial. Ask your doctor or clinical trials nurse.
Withdrawing from a clinical trial
Participating in research is voluntary and you can stop (withdraw) at any time.
You may want to leave because:
- you no longer have the time or energy for it
- don’t feel it is helping
- have side effects or your health is worsening
- move away from the treatment centre
- change your mind.
If you do decide to withdraw from a clinical trial, you will receive the standard treatment that is currently the best option for you. You may be asked why you are withdrawing from the trial – you do not have to give a reason, but it can help the research team understand more about the needs of participants if you do. You may also be asked if the team can still collect some information about your health. This can help them learn more, but it is your choice.
Finding trial results
It can take a while to get trial results. Usually results are available 2–5 years after the study finishes, but sometimes it can take 10 years or more. The results of most clinical trials will be published in medical journals and presented at medical conferences and scientific meetings.
If you’d like to know the results of the study you participated in, start by asking your doctor or clinical trials coordinator. The participant information you read at the beginning of the trial and the informed consent document you signed often say how and when the results will be available. The results are usually reported for everyone in the trial together, so you may not be able to see your individual results.
You may want to talk to your doctor about what the overall results mean. Sometimes the study results are shared with participants in an easy-to-understand document (lay summary).
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