Common questions about clinical trials and research

When cancer patients, carers and survivors, as well as people not affected by cancer, take part in research, it helps researchers learn more about cancer and ways to treat it.

Many people diagnosed with cancer who join a clinical trial or another research study do so because they want to help improve outcomes for others in the future, as well as for themselves.

Adults and children can take part in different ways, including:

• consenting to their medical records and personal information being accessed
• doing surveys and interviews
• being involved in a clinical trial
• agreeing to be examined regularly by health professionals
• allowing samples of cells or tissue taken during tests or treatment to be used for research outside of their own medical care.

All research studies, including clinical trials, have guidelines setting out who can take part. These are known as the eligibility criteria.

Most cancer research involves current patients, but some studies focus on cancer survivors, carers, family members, people at risk of cancer or people who have not been affected by the disease. Anyone under the age of 18 needs permission from a parent or guardian before joining a research study.

To make sure results reflect Australia’s diverse population, it is important that research involves people of all ages, genders and sexualities, as well as people from a wide range of social, economic, racial and cultural backgrounds.

Learn more about taking part in clinical trials or other types of cancer research.

Cancer research is carried out in many places, including hospitals, treatment centres, laboratories and universities.

Sometimes you can be involved in cancer research from home. For example, you might have treatment or medicines mailed to you, or you might be asked to fill in a survey or complete a telephone or face-to-face interview.

Understandably, people want to know if there are any risks to taking part in research. Researchers must follow strict guidelines to make sure clinical trials and other research studies are as safe as possible for everyone involved. This is called their duty of care.

Before any research involving people can begin, it must be approved by a special group known as a human research ethics committee.

As part of this process, researchers identify risks that might occur, such as possible side effects. They must also explain how they will closely monitor these risks and what will be done if problems occur.

Before you agree to take part in research, you must be told about the risks, how you will be monitored for problems, and what will be done to help you if problems occur (see Informed consent).

To reduce the risks, clinical trials are arranged in a series of steps known as phases. Learn about the different phases of a clinical trial.

From start to finish, clinical trials and other research studies may take several months or many years, but you may only need to be involved for some of this time.

For example, you might just have a single appointment lasting a couple of hours, or you may go to appointments every few weeks, months or years.

You may also have to do surveys at regular times. The participant information will set out what you would need to do and how long you would be involved.

Studies have what is known as a recruitment phase. This involves finding people to enrol in the study. It usually occurs over a few months or years until the required number of people have agreed to take part. The study is then closed to new participants.

After the treatment stage is over, there may be a follow-up phase. People may be followed up at set intervals for months or years. This allows researchers to understand the long-term effects of treatments, monitor the general health of the participants, and collect data about long-term survival and quality of life.

Ask your doctor whether being involved in the research will affect any other treatments you’re having or planning to have. These may include standard cancer treatments; medicines for managing treatment side effects or symptoms of cancer or other conditions; and complementary therapies such as herbal or nutritional supplements or massage.

Your doctor may suggest stopping or delaying some treatments, or adjusting them in some way (e.g. by changing the dose).

Joining a clinical trial or other research study is free for Australian citizens and residents, and you should not be asked to pay to join.

The cost of trial-related treatment, tests and check-ups will be paid for by the organisation that is funding or conducting the research, sometimes called the sponsor. You will usually still have to pay for any treatments or tests you would normally pay for as part of your standard care. The participant information will outline any extra costs to you.

People participating in cancer research usually don’t get paid. This is because offering people money to join a clinical trial may put too much pressure on them to agree.

In some circumstances, you may be paid back for certain expenses (e.g. for travel, parking, light refreshments). These are known as out-of-pocket costs. The participant information will outline what expenses will be covered.

You may be interested in joining multiple clinical trials and other research studies. Check with the research team whether you can be part of more than one study at the same time.

If you can, think about whether you’ll be able to commit to all the requirements of the studies. With clinical trials for medicines, you can usually only join one trial at a time.