Being part of a clinical trial

What you need to do when you agree to join a clinical trial depends on what kind of research it is. Generally, only treatment trials require preparation or ongoing follow-up, but it depends on what the study is testing and what phase it is in.

Your participation is usually organised by one person (often a clinical trials or research nurse), but you may come into contact with different members of the research team. Your overall care will probably continue to be coordinated by your cancer specialist.

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Before the trial starts

  • Discuss the trial with a member of the clinical trials team, your oncologist or other cancer specialists.
  • Read the participant information. You may want to discuss the information with family, friends or your GP.
  • Ask your doctors or the clinical trials or research nurse any questions you have about the study. For some suggested questions see the question checklist.
  • Have any medical tests, such as a CT scan and blood test, to check that the trial is suitable for you.

During the trial

  • Follow the instructions you are given about the trial to help ensure that the trial results are as reliable as possible. That means going to all appointments, having the required tests, taking medicines at the specified time, and completing logs or questionnaires.
  • Be prepared for more tests and visits to your doctor than you would normally have. This is to monitor your health and to see if and how the treatment is working. The research team will also ask about how you are feeling emotionally and physically.

After the trial is over

  • Researchers may stay in contact with you and collect follow up information for some time after the trial so they can gather long-term information on how you are doing.
  • You will return to having the standard care and/or check-ups that are appropriate for you, depending on the stage of the cancer and what your cancer specialist recommends.

Continuing access to medicines

Many people wonder whether they’re able to continue receiving the experimental treatment after a trial is over.

This depends on several factors including the trial phase and results, how effective the treatment was for you, what the recommended course of treatment is, and whether the trial sponsor is prepared to continue providing the treatment.

Some people join clinical trials to access treatments that would otherwise not be available. It can be frustrating to not be able to continue with a promising treatment after the study ends.

In many cases when the trial shows that the experimental treatment is effective and has no significant side effects, treatment may be continued long-term even after the trial is over.

Ask your doctor or clinical trials nurse whether it’s possible and advisable to continue the experimental treatment.

Click on the icon below to download a PDF booklet on clinical trials and research.

    Understanding Clinical Trials and Research

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This information was last reviewed in July 2018
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