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Clinical trials


Joining a trial

Finding a trial or study

There are many ways to find out about clinical trials and other research studies:

  • ask your cancer specialists, or they may recommend you join a suitable study
  • ask a clinical trials or research nurse, if they work in your hospital
  • search clinical trials websites – if there isn’t a suitable study available right now, you can register through websites such as Register 4 and Cart-wheel
  • information in hospital and treatment centre waiting rooms
  • discussions at patient support groups
  • the general media or social media.

If you find a trial or study you’re interested in joining, discuss it with your cancer specialist. You can ask them if you meet the eligibility criteria and, if so, whether they could coordinate your involvement or put you in touch with the research team.

Do not provide any personal information, especially via social media, until you've spoken to your treatment team.

Victorian Cancer Trials Link

The Victorian Cancer Trials Link (VCTL) has a range of resources to help you understand what it is like to be involved in a clinical trial. Hear from others who have participated in a clinical trial, read answers to frequently asked questions and find tips on how to start a conversation with your health professional. 

You can also use the VCTL to search for a cancer clinical trial in Victoria and browse the latest trials available.

Access the VCTL

Other ways to find clinical trials

Deciding to take part

Ultimately, it’s your decision to participate in research, however you might find it helpful to discuss it with your loved ones as well as your treatment team. You shouldn’t feel pressured to take part in research, and you should not feel rushed into making any decisions that may affect your health or treatment.

Ask your doctor or nurse how much time you have to think about whether or not to join a study. If you decide not to join a study, you will still receive the standard treatment for the cancer, and it won’t affect your relationship with your treatment team.

Weighing up the benefits and risks 

  • Consider what is most important to you. Some people prefer to have standard treatment with predictable side effects, whereas others want to try something new even if the benefits are not yet proven or it may have unknown side effects.
  • Think about how the study might affect your health, wellbeing and lifestyle. What is the chance of any serious side effects? Will any parts of the study be too difficult (e.g. needing to have extra tests or trips to the hospital)?
  • Weigh up these drawbacks and risks against the possible benefits, such as a possibly longer survival time or not having to experience certain side effects.
  • Remember that everyone’s situation is different – what is the right decision for someone else may not be right for you.

Getting a second opinion

Some people like to get a second opinion about whether they should join a research study, particularly if it is a clinical trial. A second opinion can:

  • confirm or clarify your doctor’s recommendations
  • help you to consider all the advantages and disadvantages of being on the trial
  • reassure you that you have thought about the different issues that might affect you.

If you would like to get a second opinion, ask your general practitioner (GP) for a referral to another cancer specialist, but keep in mind that you may have to wait several weeks for an appointment and you may have to pay extra. You can also ask your cancer specialist if it is possible to talk to another specialist within the same hospital or treatment centre.

Some people like to discuss the possibility of a trial with their GP, or you can call 13 11 20 to speak to our cancer nurses.

 

Eligibility criteria

The eligibility criteria are the rules for who can take part in the research study. They outline the features that must be shared by all participants to ensure that the people taking part are similar in certain ways. This is so the results of the study will be clearly related to the treatment, not to other individual factors.

Depending on the research, the eligibility criteria may include:

  • age or sex
  • cancer type
  • stage of the cancer
  • symptoms or side effects experienced
  • length of time since diagnosis or treatment
  • previous treatments for the cancer
  • other medical conditions.

The eligibility criteria also help keep people safe by considering things that might make the trial too risky for them. Although there are thousands of different clinical trials occurring around the world at any one time, eligibility requirements can be very specific, and there may not be a trial suitable for your particular situation.

Practical considerations

Informed consent

Before becoming part of a clinical trial, all participants have to give 'informed consent'. This means you will be asked to confirm you have read and understood the purpose, risks and possible outcomes of the research before deciding to join.

Informed consent involves:

  • Written information – after talking to you about the study, members of the research team will give you a written document known as the participant information. This explains the purpose of the study, what is expected of you if you join, what the possible risks are, how your information will be used, and how the results will be presented.
  • Informed consent discussion – after you have read the participant information, you can discuss the study in more detail with the clinical trials or research team and ask them to explain anything you find unclear.
  • Agreement in writing – once all your questions have been answered, you can then decide whether or not to join the study. If you do choose to take part, you will be asked to sign the informed consent form. This confirms that you understand the purpose of the study, what is involved, and you agree to participate.

For some low-risk studies, written informed consent may not be needed. For people under 18, a parent or guardian has to give legal consent as well.

Signing the form is not a contract and you can change your mind at any time. If the study changes or new information becomes available while you are involved, you will be given updated participant information. You will need to sign an updated version of the consent form if you are willing to continue. Sometimes you may need to consent to each aspect of a study. 

Participant information

Researchers must provide written information about the research study to anyone thinking about joining. This is called participant (or patient) information. It answers a range of questions about the study, including:

  • the purpose of the study
  • if it is a clinical trial, and what phase it is in
  • who can participate in the study
  • who is running the study (institution and researchers)
  • who has approved the research
  • who is funding the study
  • how the study will be run and what you need to do
  • how the study will be monitored
  • whether you will need to have tests, scans or other procedures
  • how long you need to be involved
  • where you need to go for appointments, treatments or meetings
  • whether the researchers need to see your medical records
  • whether you will be paid back (reimbursed) for any expenses related to the study (e.g. transport or parking costs)
  • information about possible side effects or other risks
  • information about possible benefits
  • any restrictions on things you can do while you are on the study (e.g. treatments you can’t have)
  • who to contact for more information or if you have any problems or complaints during the study
  • information about your rights, such as keeping your records private and your ability to withdraw from a study.

Contact person

All clinical trials and other research studies have a contact person. You can talk with this person before you decide to take part and at any stage during the study if you have questions or concerns. The contact person is often a clinical trials nurse or study coordinator.

You will also be given details of who to contact if you have a complaint about the study (e.g. about how the study was run or how you were treated). This person is independent of the research team and is usually a senior member of the human research ethics committee. Complaints about research are rare, but it is your right to have your concerns heard if you have a problem.

Privacy

Medical records are private and confidential, including those about your involvement in a clinical trial. Health professionals directly involved in your care or study can access your personal and medical information, but only if it’s necessary for their work. They can’t give any information about you to others unless it is relevant to your health care or the study.

Clinical trials and other research studies collect personal data about you. The participant information may mention who will and won’t have access to your personal data. You might be asked to consent to the research team seeing your existing medical records or particular test results.

Information collected during the study is often de-identified. In most cases, this means that your name will be removed and replaced with a unique participant number so your identity cannot be revealed unless necessary, e.g. for safety reasons. Being de-identified means when the results are published in medical journal articles or discussed at medical conferences, you will not be named.

At the end of a clinical trial, all personal information is stored in a secure place for at least 15 years before it can be destroyed. This is a legal requirement. If you have questions or concerns about your privacy in a clinical trial or other research study, talk to the clinical trials or research nurse.

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.

Continuing the treatment

Many people wonder if they can keep having the experimental treatment after a trial is over. This depends on several factors, such as 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. 

It can be frustrating to have to stop a treatment after the study ends. When a trial shows that the experimental treatment works and has no major side effects, the treatment can sometimes be continued after the trial.

Withdrawing from a trial

Participating in research is voluntary and you can stop (withdraw) at any time. You may want to leave because you no longer have the time or energy for it, don’t feel it is helping, have side effects or your health is worsening, move away from the treatment centre, or change your mind.

If you do decide to withdraw from a clinical trial, you will receive the standard treatment that is currently the best option for you. You may be asked why you are withdrawing from the trial – you do not have to give a reason, but it can help the research team understand more about the needs of participants if you do.

You may also be asked if the team can still collect some information about your health. This can help them learn more, but it is your choice.  

Finding trial results

It can take a while to get trial results. Usually results are available 2–5 years after the study finishes, but sometimes it can take 10 years or more. The results of most clinical trials will be published in medical journals and presented at medical conferences and scientific meetings.

If you’d like to know the results of the study you participated in, start by asking your doctor or clinical trials coordinator. The participant information you read at the beginning of the trial and the informed consent document you signed often say how and when the results will be available.

The results are usually reported for everyone in the trial together, so you may not be able to see your individual results. You may want to talk to your doctor about what the overall results mean. Sometimes the study results are shared with participants in an easy-to-understand document (lay summary).

Question checklist

You may have many questions when deciding whether to join a clinical trial. Asking questions will help you make an informed choice. You may want to include some of the questions below in your own list:

How the trial or study will affect you
  • What are my chances of benefiting from this research?
  • What are the potential risks to me?
  • Will I experience any side effects? How will they be treated?
  • Are there any extra tests involved?
  • Will I need to take time off work? Will my day-to-day life be affected?
  • Can I be paid back for any out-of-pocket expenses?
  • Can I still participate if I need to travel interstate or overseas? 
  • If I join this study, will I miss out on other treatment opportunities?
  • How much time do I have to think about whether to join this trial? If I take time to decide, will delaying the treatment affect how well it works?
  • Who will oversee my cancer care while I’m participating?
  • Can I still have other medicines or complementary therapies?
About the trial or study
  • Can you go through the participant information with me?
  • Can I have the participant information in a different language?
  • What is being tested in the trial or study and why?
  • How many other people will be involved in this research?
  • How long does the research last? How long do I need to be involved?
  • Will the trial use a placebo?
  • If it is a randomised controlled trial, will I have the option to switch treatment arms if the cancer advances or I have bad side effects? 
  • Who is funding the trial? Has it been approved by an ethics committee?
  • Who can I contact if I have a problem?
  • Can I leave the trial early?
After the trial or study
  • What will happen with the research results? How will I be told about them?
  • Will I have follow-up care through the clinical trials team?
  • If I respond to the treatment, will I still be able to get it after the trial is over?

Looking after yourself

If you agree to participate in research, you may have mixed emotions during or after the study. It’s important to discuss any worries with your doctor or clinical trials or research nurse. They can help you understand information about the research so that you feel reassured and positive about your involvement.

Make sure you understand the aims of the research before you participate so you have realistic expectations. 

Get support

Knowing what to expect

What you need to do when you agree to join a clinical trial 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.

The following points may be helpful to consider before agreeing to participate:

  • You must follow all the instructions you are given about the trial. This will help make the trial results as reliable as possible.
  • You may have to answer 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.
  • 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 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.
  • The research team will ask about how you are feeling emotionally and physically, and you should tell them about any side effects you are experiencing. 
  • 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.

Caring for someone considering a trial

It is often a good idea for carers to read about the study themselves and talk it over with the person who has cancer. You can also discuss the study with the clinical trials or research nurse.

While the decision to join a study can only be made by the person with cancer (unless they’re under 18), it’s important to understand what impact the study might have on them, and on you and your family. For example, you may have to take extra time off work to drive the person to appointments, or you may be worried about how the treatment will affect them. If the study will mean you have extra expenses (such as parking fees), check whether you can be paid back for these.

Being involved in research may offer the person with cancer a chance to have a promising new or improved treatment or useful supportive care options. It may be satisfying to know that their participation will help others in the future. As a carer, you may also be asked to take part in research into the experience of carers, for example, by doing surveys about your wellbeing.

Understanding Clinical Trials and Research

Download our Understanding Clinical Trials and Research booklet to learn more

Download now

 

Expert content reviewers:

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 Coordinator, 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.

Page last updated:

The information on this webpage was adapted from Understanding Clinical Trials and Research - A guide for people with cancer, their families and friends (2022 edition). This webpage was last updated in March 2022.

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