Common Questions About Cancer Clinical Trials

Cancer clinical trials can offer patients cutting-edge treatment paired with individualised support. However, many misconceptions prevent patients from further researching or even considering a clinical trial. 

Are clinical trials safe? Am I going to be a guinea pig?

All cancer clinical trials share a common thread, and that is to raise the standards of treatment. Your doctor and other healthcare providers will treat you like a patient, never like a guinea pig. There are many safeguards in place to ensure that clinical trials are safe, ethical, and have the patients' best interests in mind.

Before a clinical trial can even take place, it is reviewed by both medical professionals and an ethics committee. This review ensures that all participants will have their rights protected. It also ensures that no beneficial treatment will be withheld during the clinical trial. That means that before a clinical trial starts, there's already careful oversight of the new medications or new combinations of existing treatments that will be studied.

When you participate in a cancer clinical trial, you will receive extra, individualized attention and care. You may have more doctor visits and testing to monitor any disease development. 

According to the National Cancer Control Indicators (NCCI)¹, "patients enrolled in clinical trials tend to have better outcomes in terms of quality-of-life and survival, most likely due to greater adherence to guidelines and protocols by clinicians."

Over the years, modern treatments for cancer have all gone through clinical trials. For example, the therapeutic effects of chemotherapy were first noted in 1946. Research in chemotherapeutics expanded greatly in the 1970s.

Patients who participated in these earlier clinical trials paved the way for today's standard treatments. As new cancer treatments emerge, clinical trials are necessary for continued progress.

What about treatment side effects?

Participating in a clinical trial may mean that you could experience side effects from treatment. If a treatment used in a clinical trial has known side effects, these will be explained to you beforehand.

Some side effects may be mild and not prevent you from staying in the trial. Other side effects may be more concerning. If that happens, your doctor may ask that you stop participating in the trial, and start receiving standard treatment for your cancer. 

Your participation in a clinical trial is always voluntary. You have the right to withdraw from a clinical trial at any time, even if you don't experience any side effects. If you do decide to stop participating, it will not be held against you. You will receive the best standard of treatment that is available for your type of cancer. 

What are participants told about their clinical trial? 

Procedures are in place so that participants know as much as possible about the clinical trial. It is important that you can make an informed decision before you decide to participate. You will be told:

• The purpose and duration of the clinical trial

• A description of the trial treatment and what aspects are considered experimental

• Approximately how many people will be in the trial

• Your responsibilities and commitments throughout the trial

• Expected benefits

• Possible risks and side effects

• How the trial will be monitored

• Any payments that will be made to you for participating

• Any expenses you may incur during the trial

• What business or organization is sponsoring the trial

Many cancer clinical trials are "blind." In a blind trial, the patient does not know if they are receiving the experimental treatment or a standard treatment.

In a "double-blind" trial, neither the patient nor the patient's doctor knows which treatment is being administered. Blind trials eliminate the power of suggestion and prevent any bias. 

Are cancer clinical trials just a last resort?

Unfortunately, it's a misconception that cancer clinical trials are only available to people who have exhausted all other options. That simply isn't true. There are trials available to patients with different types and varying stages of cancer.

Cancer clinical trials do more than just test brand-new drugs. Some trials seek to compare existing medications or treatment modalities, or new combinations of existing drugs.

Others might involve non-medication interventions, such as dietary changes or psychotherapeutic and behavioral therapies. And still, other clinical trials compare or explore different diagnostic testing and monitoring methods.

I was told I didn't meet the inclusion criteria for a clinical trial. Can I volunteer for a different clinical trial?

Yes, you can. Each clinical trial is different. One cancer clinical trial may study patients in a certain age range, while others need volunteers who haven't received any prior treatment. Just because you were excluded from one clinical trial doesn't mean you won't be able to participate in another one in the future. 

Every year, more than 1,000 new clinical trials start in Australia². New trials start all the time, so keep checking back.

Find available clinical trials by searching for your condition here.

Will I get a placebo, rather than actual treatment?

Many patients with cancer wonder if they will get a placebo, or what is commonly called a "sugar pill." A placebo is meant to look like a drug or injection but does not contain any medication.

There are some important things to know about the role of placebos in cancer clinical trials.

It is unethical to withhold treatment when a beneficial treatment for a type of cancer exists. As such, placebos in cancer trials are rare.

The trials that do include a placebo have one group receiving a placebo plus a standard treatment, while the other group receives two different treatments. Placebos are not used if a patient would be put at risk by not receiving effective treatment.

You will be told in advance if a clinical trial involves a placebo. That way, you can make an informed decision.

Will I have to give up control of my personal information?

The Australian government recognizes that your health information is sensitive. Any personal information that you provide during a clinical trial is handled according to Privacy Act 1988³.

If the results of the clinical trial are published, any personal information such as your name will not be included.  

Are clinical trials free?

What healthcare costs you are responsible for will depend on whether you have public or private health insurance, and whether you are being treated as an in-patient or out-patient.

However, a clinical trial won't cost you any more than standard treatment would. Any costs above and beyond standard treatment will be covered by the trial organizers. 

A cancer clinical trial may be funded by the Cancer Council, National Health and Medical Research Council, or a pharmaceutical company. The University of Sydney reported⁴ that every year, the government and medical industry invest a total of $1 billion in clinical trials.     

Transportation costs may be a consideration, especially if you live in a rural area. Some clinical trials may pay you for your time, while other trials may require you to pay for your own transportation to and from the hospital. The hospital closest to you may not participate in the clinical trial. You may have to travel to a different hospital for treatment, testing, or monitoring.

What are the demographics of people who participate in clinical trials?

People of all ages, races, and backgrounds are welcome to participate in cancer clinical trials.

Some clinical trials may inherently exclude certain demographics, as this is where the research is being conducted. For example, a trial may be for children with a certain type of cancer. Or, a clinical trial could test how well men tolerate a certain drug that has historically been given to women. 

There's a good chance that someone you know has participated or is participating in a clinical trial. According to the University of Sydney, between 2006 and 2015, 5.2 million people participated in over 10,500 Australian clinical trials. 

Cancer is the most studied health condition, with almost 20% of all clinical trials devoted to cancer. And in Western Australia, over 70% of children⁵ with cancer are enrolled in a clinical trial. 

According to the Australia Clinical Trials Alliance⁶, not having English as a primary language has been a barrier for some patients. Almost 20% of Australians speak a language other than English at home. This problem is recognized by the medical community. There is a push to reach more non-English speakers through multilingual patient information.

The lowdown

When you consider whether or not to participate in a cancer clinical trial, remember that:

• Your participation in a clinical trial is always voluntary.

• You can withdraw from a clinical trial at any time, for any reason. 

• A clinical trial won't cost you more than standard treatment would. 

Find the right clinical trial for you

A clinical trial can give you access to better interventions, comprehensive monitoring, and state-of-the-art treatments. When you participate in a clinical trial, you improve not just your future, but the future of other patients.

Search now for a clinical trial.