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
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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.