Before you go into a trial, a doctor, nurse or other researcher will ask your permission. They can’t enter you into the trial if you don’t give your consent.
To help you decide whether you want to take part, the researchers should tell you:
- what the trial is trying to find out
- how you will be treated
- what you will have to do.
Guidelines have been drawn up for researchers to tell them what information people need to help them decide whether to take part in a clinical trial. But there is a lot of discussion about how much people really want to know and this varies from person to person.
It’s important that you are satisfied that you have enough information to make an informed decision. You should feel free to ask any questions that you believe are important in helping you to reach a decision. You should also feel that you have been given enough time to think about the trial and what it will mean to you before you decide.
The person who suggested that you take part in the trial in the first place should discuss it with you. They will explain why they have suggested it and answer any questions you may have. They should be able to give you an idea of any possible benefits and potential risks of the trial, and give you a patient information leaflet or fact sheet about the trial that you can take away and read in your own time. They should also discuss any other treatments that may be appropriate in your situation. You may want to talk about it with your family or friends and think about any practical aspects, such as extra appointments and tests.
If you decide to take part in the trial
If you decide that you want to take part, you may be asked to give your consent verbally to the person carrying out the trial, who will write it in your notes. You will then be asked to sign a consent form that says that you agree to take part, and the form will be countersigned. You will be given a copy to keep.
If you decide not to take part in the trial
If you decide not to take part in the trial, you can tell your doctor or nurse. Your decision will be respected and you don’t have to give a reason. There will be no change in the way that you are treated by the hospital staff and you will be offered the standard treatment for your type of cancer.