What you need to do when you agree to join a study depends on what kind of research it is. Generally, only clinical trials require preparation or ongoing follow-up, but it depends on what the study is testing and what phase it is in.
Topics on this page:
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.
- 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. For example, 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.
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.
After the trial is over
Researchers may stay in contact with you for some time after the trial so they can collect 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 medications
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 phase of the trial
- the study results
- how effective the treatment was for you
- what the recommended course of treatment is
- whether the trial sponsor is prepared to continue providing the treatment.
Ask your doctor or clinical trials nurse whether it’s possible and advisable to continue the experimental treatment. If you are told you are not able to continue with the promising treatment, you may feel frustrated and disheartened.