There are differences between trials depending on the type of trial and what the trial is looking at. If you decide to take part in a trial, the research team should give you information about what it involves.
During the trial you’ll usually go to a hospital to have your treatment, as well as tests or scans. You’ll have regular check-ups as part of the trial. You might have your usual hospital checks as well. You won’t be paid for taking part in a trial. Some trials may offer to pay for things like travel to and from the hospital. Ask your research team what they will pay for.
Getting information and giving your consent
Before you start on a clinical trial, the research team has to get your consent. This means signing a form to say that you understand what the trial involves and that you agree to take part.
Before you agree to take part, the research team should:
- explain the trial to you in detail
- give you written information about the research, called a participant information sheet
- talk you through everything
- answer your questions
- give you time to think before you decide whether to sign the consent form.
Make sure you find out everything you can about the trial so that you have all the information you need to make a decision that’s right for you. And don’t feel that you have to make a quick decision.
You might want to discuss the trial with someone else before you decide – maybe your partner, family, GP, hospital doctor or nurse. Or you can call our Specialist Nurses. They’ll be happy to discuss the trial with you.
Before you sign the consent form, ask yourself these things.
- Am I comfortable with the tests that need to be done during the trial – and how often they will happen?
- Can I get to the hospital easily for the tests and treatment? Some people having cancer treatment find travelling long distances very tiring.
- Do I clearly understand the possible side effects and risks of having the treatment, and that there might be unexpected side effects?
- If the trial is blinded, am I comfortable with not knowing which treatment I will receive?
- How might taking part affect my lifestyle or daily life?
- Will taking part affect any treatment I’m currently receiving or planning to have?
If you decide to go ahead, the research team should also tell you who to contact if you have any questions or concerns during the trial.
Checks and tests before the trial
Once you’ve given your consent, you’ll have some tests and checks to make sure you’re suitable for the trial. The research team will ask about your medical and treatment history, and any symptoms you have. You’ll also have a physical examination and you might have blood tests, scans and other tests. This is to find out more about your prostate cancer and any other health problems you might have. In some trials, men with certain other health problems won’t be able to take part.
If the tests show that you don’t meet the criteria for the trial, you won’t get to take part. But you will still get the best care available.
Can I leave the trial?
You can leave the trial at any time without giving a reason. But if you’re happy to give a reason, it could help the research team to improve their trials in the future.
Leaving a trial will not affect any future care you receive, so you will still have treatment for your cancer. You’ll be offered the standard treatments for your stage of cancer. Health professionals won’t treat you differently because you’ve left a trial.
What will happen to my personal information?
Your personal information should be stored securely and kept confidential. The research team might use a code so you can’t be identified by name. They should let you know how any information they collect during the trial will be used and ask for your permission to use your information.
Normally your GP will be told that you’re taking part in a clinical trial. The research team should tell you what information they will give to your GP. If your GP, or other health professionals who aren’t involved in the trial, prescribe you any treatment or medicines – not just for prostate cancer – ask them to contact the research team to make sure it won’t affect the trial.
What happens when the trial finishes
The research team should tell you what will happen with the results of the research. For example, whether they will be published in a medical journal, and if you can see them. You won’t be identified in any report or publication without your permission.
If the trial is successful, you might want to keep having the treatment after it ends. This is sometimes possible, but not always. Ask the research team about this before the trial starts. If a new treatment works well, the research team might stop the trial early so that everyone on the trial can be offered it, not just those in the treatment group. They might also stop the trial early if the new treatment doesn't work well or causes too many side effects.
The research team may also want to stay in touch for some time after the trial. This is so that they can collect long-term information about the effects of the treatment you received.
Why can trials take so long?
Sometimes you might hear about a new treatment years before it actually becomes available. This information could come from results during the very early stages of the research, before the new treatment has been fully tested. So it may be a while before the new treatment is available. How long depends on lots of things, such as the type of treatment, how many patients are needed on the trial and the aim of the trial.