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Before you go into a trial, a doctor, nurse or other researcher will ask for 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:
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’s a lot of discussion about how much people really want to know, and this varies from person to person.
It’s important that you’re 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. Before you decide, you should also feel that you have been given enough time to think about the trial and what it will mean to you.
The person who suggested that you take part in the trial should discuss it with you. They’ll explain why they have suggested it and answer any questions you may have. They should be able to give you an idea of the possible benefits and potential risks of the trial. They should provide you with 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 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’ll then be asked to sign a consent form that says that you agree to take part. The consent form will be countersigned and you’ll be given a copy to keep.
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 you are treated by the hospital staff, and you’ll be offered the standard treatment for your type of cancer.
During the trial, your cancer specialist and GP are still the people in charge of your care. They’ll make the day-to-day decisions with you about your treatment.
I think you have to remember that you can pull out of a trial at any stage, however far in you are or how little time you've been in it. And you have to trust that it's not going to compromise your care, although I do understand the concerns that people will have about that. Ben
I think you have to remember that you can pull out of a trial at any stage, however far in you are or how little time you've been in it. And you have to trust that it's not going to compromise your care, although I do understand the concerns that people will have about that.
Remember that even if you agree to take part in a trial, you can leave it at any time without giving a reason. If you’re having a new treatment as part of a trial and then leave the trial, you may not be able to continue having the new treatment. In this situation, you’ll be given the appropriate standard treatment for your type of cancer.
If you’re thinking of leaving a trial, it’s a good idea to discuss it with your specialist or your research nurse.
If you agree to take part in a clinical trial, your GP will only be told if you give your consent. It can sometimes help for your GP to know you’re in a trial as they’re responsible for your day-to-day health at home. If you have any queries or problems during the trial, you should talk to the specialist doctor responsible for it, or your research nurse.
Your medical records concerning the trial are confidential. Sometimes, a representative of a relevant drug company or staff from the trials office who are coordinating the trial, may look at your records to check that all the necessary information is collected accurately. No one who looks at your notes can give information to anyone outside the healthcare team looking after you. In the same way, when the results are published you will not be named.
Blood and tumour samples may be taken to help make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. If you take part in a trial, you may also give other samples, which may be frozen and stored for future use when new research techniques become available. Your name will be removed from the samples so you can’t be identified.
The research may be carried out at the hospital where you’re treated or at another one. This type of research takes a long time, and results may not be available for many years. The samples will be used to increase knowledge about the causes of cancer and its treatment, which will hopefully improve the outlook for future patients.
Content last reviewed: 1 February 2013
Next planned review: 2015
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© Macmillan Cancer Support 2013
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