How to be part of a clinical trial
For anyone interested in being part of a clinical trial, the first step is finding out more about trials in general and what is involved in a particular clinical trial. It is a good idea to seek out information from a number of sources.
There is a wealth of information available on this and other websites about clinical trials in general, why a person may want to be part of a clinical trial, the ethics and regulation of clinical trials in Australia and how to find a trial that is relevant.
Who to talk to
You can talk to any of the health professionals involved in your care — general practitioners (GPs), specialists, or nursing or allied health professionals. They should be able to provide general information about clinical trials and may have information on clinical trials that is relevant you.
Support groups or consumer health organisations with an interest in a particular disease or condition that you are interested in may also have information on trials, or be able to provide contact information for other patients who have been involved in trials.
Questions to ask
If you are thinking of being part of a clinical trial, you should know as much as possible about the trial and your involvement in it. You can discuss your questions with your doctor and with the research team. You may also find some of the answers to your questions in the participant information and consent form.
When you plan to discuss participation
- consider taking a family member or friend along for support and for help in asking questions or recording answers
- plan what to ask ahead of time, but don't hesitate to ask any new questions that you think of while you're there
- write down your questions in advance to make sure you remember to ask them all
- write down or record the answers, so that you can review them whenever you want
- remember that you can ask further questions to the team running the trial at any time
- remember that you can withdraw from the trial at any time and resume other treatment, if that is recommended.
Here are some questions that you may want to ask:
About the trial
- What is the aim of the trial and how will it help people?
- Has the intervention been tested before and, if so, what was the outcome?
- Will the trial use a placebo (a ‘dummy’ treatment), standard care or another established intervention as the control to compare with the new intervention?
- Who is funding the trial?
- How might this trial affect my daily life? How much of my time will be needed?
- What kinds of tests and experimental interventions are involved?
- Will I have to complete questionnaires or keep a diary?
- Will I need to spend time in hospital?
- Will I need to take time off work or school?
- Where will the trial be conducted and will I have to travel to be part of it?
- Will I be able to take my regular medications while participating in the trial?
- How long is the trial expected to last? How long will I have to be part of it?
- What will happen if I stop the trial intervention or leave the trial before it ends?
- Who will be in charge of my care? Who can I contact for support and information during the trial? Will someone be available 24 hours a day?
- What are the risks of taking part in this trial? What are the possible side effects of the trial intervention?
- How do the possible risks, side effects and benefits in the trial compare with my current treatment or care?
- If people receiving one intervention in the trial respond much better than people receiving the other intervention or standard care, will all participants be given access to the more effective intervention?
- Who will pay for the experimental intervention?
- Will I be paid to participate in the trial?
- Will my expenses be covered?
- If there are complications that arise from the trial, who is responsible for paying for any costs that are associated with them?
After the trial
- What follow-up care is available after the trial?
- How long will it be before the results of the trial are known?
- How do I find out the results of the trial?
- Will I have access to the experimental intervention after the trial if I wish to continue with it?
Find a clinical trial website
Search for clinical trial registries, organisations, research networks, coordinating hubs and support groups by specific disease or condition.
Consumer guide to clinical trials
The Consumers Health Forum have developed a factsheet about clinical trials.
Questions to ask
Need help with questions to ask if you're thinking about being part of a clinical trial?
Download the Questions to Ask Fact Sheet (PDF, 253KB) and take it with you.