- Cancer Information
- Cancer treatment
- Clinical trials and research
- Joining a study
- Being part of a clinical trial
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.
Learn more about:
- 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.
- 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.
- 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.
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.
Download a PDF booklet on this topic.
A/Prof Andrew Redfern, Consultant Medical Oncologist, Fiona Stanley Hospital, Clinical Academic Oncologist, The University of Western Australia, and Lead Clinician, State Breast Cancer Collaborative, WA; Christie Allan, Program Coordinator – Clinical Trials, Cancer Council Victoria; Bronwyn Chalmers, Clinical Trial Coordinator, Westmead Breast Cancer Institute, NSW; Sarah Coulson, Coordinator, Oncology Clinical Trials, Projects and Research, Tasmanian Health Service, TAS; Kate Cox, 13 11 20 Consultant, Cancer Council SA; Annette Cubitt, Clinical Trials Manager, Department of Medical Oncology, Cancer Care Services, Royal Brisbane and Women’s Hospital, QLD; Pete Currie, Consumer; Amy Ives, Clinical Trials Coordinator, Department of Medical Oncology, Cancer Care Services, Royal Brisbane and Women’s Hospital, QLD; Sabina Jelinek, Clinical Research Nurse, Murdoch Oncology Clinical Trials Unit, WA; Dr Visalini Nair-Shalliker, Research Fellow – Prostate, Cancer Council NSW; Karlie Neilson, Project Officer – Cancer Research Division, Cancer Council NSW; Prof Mark Rosenthal, Medical Oncologist, and Director, Parkville Cancer Clinical Trials Unit, VIC; Joan Torony, CEO, TROG Cancer Research, NSW; Rebecca Weselman, Senior Clinical Trials Coordinator, Oncology Clinical Trials, St John of God Murdoch Hospital, WA; John Williams, Research Governance Officer, Cancer Council NSW.
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