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Your role in the trial or study

What you need to do when you agree to join a clinical trial or other research study depends on what kind of research it is. Some studies need preparation and ongoing follow-up, others involve a single visit or just a survey.

Your participation is usually organised by one person (often a clinical trials or research nurse or research assistant), but you may come into contact with different members of the research team.

Finding out about the trial

  • Your cancer specialist may suggest a trial to you, or you may find a trial through your own research.
  • Discuss the trial with a member of the clinical trials team and your cancer specialist. You may also choose to see another specialist for a second opinion.

Checking you are eligible

  • Answer some questions about your medical history and have a physical examination and any required tests, such as a CT scan and blood test, to check that the trial is suitable for you. This is known as screening.
  • Once the clinical trials team has these results, they will let you know if you have been accepted into the trial.

Deciding to join

What to expect

  • Expect that you may have less flexibility on the trial than you would with standard cancer care – for example, you may need to have blood tests or treatment on particular days. This may mean you need to adjust your work schedule or childcare arrangements more than you would if you were not involved in the research.
  • 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.

During the trial

  • Follow the instructions you are given about the trial – that means going to all appointments, having the required tests, taking medicines at precise times, and completing logs, surveys or interviews. This will help make the trial results as reliable as possible.
  • Tell the research team about any side effects you are experiencing. The research team will ask about how you are feeling emotionally and physically.

After the trial

  • Researchers may stay in contact with you and ask follow-up questions for some time after the trial. This will give them long-term information on how you responded to the trial.
  • You may return to having the standard care and/or check-ups and tests that are appropriate for you, depending on the stage of the cancer and what your cancer specialist recommends. In certain circumstances, you may be able to keep having the trial treatment.

Communicating with the treatment team

  • Keep contact details handy in case you have questions before, during or after the trial or study.
  • If your clinical trials team has given you a participant card, keep this with you and show it to any other health professionals you see.
  • If you join a clinical trial at a different hospital to the hospital where you started cancer treatment, you may have two treatment teams. In this case, make sure your medical information and any relevant test results are available to both treatment teams, and ask who your main contact person is.
  • If you are in a trial and develop new or worsening symptoms, let your clinical trial and cancer care teams know immediately. If the symptoms are serious, go directly to your hospital’s emergency department and/or contact the oncology registrar at the hospital. It is important to tell the hospital you’re in a clinical trial and show them the participant card if you have one. If you go to hospital, let your clinical trials team know.

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Understanding Clinical Trials and Research

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This information was last reviewed in January 2022. View who reviewed this content.

A/Prof Brett Hughes, Senior Staff Specialist, Medical Oncology, Royal Brisbane and Women’s Hospital and The Prince Charles Hospital, and Associate Professor, The University of Queensland, QLD; Christie Allan, Clinical Trials Lead, Cancer Council Victoria, VIC; Dawn Bedwell, 13 11 20 Consultant, Cancer Council Queensland, QLD; Joanne Benhamu, Senior Research Nurse, Team Lead, Lung, Colorectal and Palliative Care Trials, Parkville Cancer Clinical Trials Unit, Peter MacCallum Cancer Centre, VIC; Louise  Dillon, Consumer; Sabina Jelinek, Clinical Nurse Research, St John of God Murdoch Hospital, WA; Chloe Jennett, Program Coodinator, Cancer Research, Cancer Council NSW; Carmel McCarthy, Consumer; Alison Richards, Research Unit Manager, Medical Oncology Clinical Trials Unit, Flinders Medical Centre, SA; Prof Jane Ussher, Translational Health Research Institute (THRI), School of Medicine, Western Sydney University, NSW; Prof Janette Vardy, Medical Oncologist, Concord Cancer Centre, and Professor of Cancer Medicine, The University of Sydney, NSW.

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