About clinical trials

If a clinical trial becomes available, it may be an interesting opportunity. However, clinical trials are not right for everyone. There are advantages and disadvantages to participating that you need to consider.

Advantages of clinical trials

• A clinical trial may be the best treatment option available.
• The trial may give you access to a new treatment before it becomes widely available.
• You will receive additional care from your healthcare team.
• Your participation in a trial means you are helping to make medical advances.

Disadvantages of clinical trials

• You may not receive the new treatment – you may receive the standard treatment that is the comparison in the trial.
• The new treatment may not work as well as the standard treatment.
• The side effects of the new treatment may not be fully known.
• You may need to visit the hospital or clinic more often and have more tests.

If you’re interested in participating in a clinical trial, you want to make sure you fully understand the reasons for the trial and what it means for you.

It’s important to know that you (and your doctor) may not know whether you receive the ‘new treatment’ or the standard treatment. This is to prevent bias in the research.

Before making a decision, you may want to consider these questions:

• How quickly do you need to make a treatment decision?
• What treatments are being tested in the trial and why?
• What tests are involved?
• What are the possible risks or side effects?
• How long will the trial last?
• Will I need to go into hospital for treatment?
• What will I do if any problems occur while I am in the trial?

The decision to take part in a clinical trial is entirely yours to make.

• If you decide to participate in a clinical trial – you may stop participating at any time for any personal or medical reason.

• If you choose not to participate in a clinical trial – you will not be treated any differently by your doctor or nurse. It is your body and your health, and you should not feel pressured to do anything you are not comfortable with.

All clinical trials are required to be reviewed and approved by an Ethics Committee. If you participate in a clinical trial, you will receive contact details of the Committee that approved your trial, and you are welcome to contact them if you feel uncomfortable at any stage.

You will need to sign a consent form to participate in a trial. Informed consent is one of the most important parts of the trial process – make sure you are given as much information as possible. It is your right to ask as many questions as you want until you feel sure you understand what the trial involves. You can also take the information sheet home and discuss it with a family member or friend before you agree to take part.

By signing the consent form, you are confirming that you have been given the form and that you understand this information. You should not sign the form unless you understand what you are being asked to do.

If you are wondering whether participating in a clinical trial will affect your health insurance, the answer is: usually no. But you should contact your health insurer prior to starting a clinical trial so it’s aware of your intentions.

Rest assured that your personal and health information collected as part of the trial (as with any other health data) is kept completely confidential.