WHY PARTICIPATE IN A CLINICAL TRIAL

WHY SHOULD I PARTICIPATE IN A BREAST CANCER CLINICAL TRIAL?

While new treatments are tested extensively in the lab, they need to be tested in humans to ensure they work in the patient group they are intended for. Trial participants help researchers and doctors understand more about how the new treatment works, if it is more effective than the current available treatment and to determine the correct dosage of the new treatment.

Clinical trial participants are an essential part of the clinical trials process. Without willing volunteers, we could have no new treatments or prevention strategies for breast cancer.

THE BENEFITS OF PARTICIPATING IN A CLINICAL TRIAL

There are many different reasons people choose to take part in a clinical trial, including:

• Being able to access a new treatment, or drug before it is routinely available as a standard treatment for all breast cancer patients; 
• You may access a new drug or treatment at no cost while on the clinical trial;
• The treatments offered on a clinical trial include the best current standard treatment, compared with a new treatment which earlier research shows may be better;
• By participating in a clinical trial, you are helping to advance medical knowledge and your participation may help to improve treatments and outcomes for future women diagnosed with breast cancer or who are at risk.

Clinical trial participants may also be monitored more closely than patients who are receiving the standard treatment, and their treatment is rigorously documented. There are usually questionaries to complete regarding the participants or feelings towards the treatment being trialled. This careful follow-up means that the outcomes of the clinical trial are the result of accurate and detailed information which is then published in peer reviewed scientific journals.

WHAT DO I NEED TO KNOW BEFORE SIGNING ONTO A CLINICAL TRIAL

Participation in a clinical trial is completely voluntary. If you do not wish to take part, you do not have to. If you decide to take part and later change your mind, you are free to withdraw from the study at any time.

If you are offered a place on a clinical trial and you decide not to take part, this will not affect your routine treatment, your relationship with those treating with you or your relationship with the cancer centre or hospital in which you are being treated. 

Before signing onto a clinical trial, you will be given a lot of new information to consider. This is to ensure you can give informed consent to participating in the trial. 

Your treating doctor or clinical trial coordinator will go through all this information with you. This includes the clinical trial protocol and informed consent forms. They will discuss the trials aims, potential side effects and what of trial it is. 

All Breast Cancer Trials clinical trial patient information has been approved by our Consumer Advisory Panel (CAP). This mean all information has been read by and approved by a group of women who have experienced a breast cancer diagnosis. CAP ensures all clinical information is easy to read and provides enough information to those considering participating in a clinical trial. 

If you have any questions about participating in a clinical trial, you can discuss this with your doctor or clinical trial coordinator. It’s important to know you don’t need to make a decision right away. You can take the information home and discuss your options with someone you trust.

QUESTIONS TO ASK BEFORE TAKING PART IN A CLINICAL TRIAL

Before you take part in a clinical trial, you should feel confident in your decision. While all the information you need should be provided in the documents given to you by your doctor or clinical trials coordinator. It may help to ask questions to help you comprehend the information you have been given. 

The following questions may be helpful during a discussion with your doctor or clinical trials coordinator. 

• What is the aim of this clinical trial? 
• Who is running this clinical trial?
• Why am I eligible to take part in this trial? 
• Why do researchers believe this drug/treatment/intervention will be effective in treating my cancer? 
• What do we know about the drug/ treatment being used in this clinical trial? 
• How will it be decided which interventions I receive? Will I know? Will my doctor know?
• What will I have to do on the clinical trial? 
• What tests and procedures are involved on this clinical trial?
• What are the possible risks and benefits of taking part in this clinical trial? 
• How often will I have to attend the clinic or hospital as part of my participation?
• How long does the study last? 
• What type of long-term follow up is involved in this trial? 
• If I benefit from this trial, will I be able to keep receiving the drug/ treatment/ intervention after the study ends? 
• Who will be part of my clinical trials treatment team? 
• When will I know the results of the clinical trial?

HOW DO I TAKE PART IN A CLINICAL TRIAL?

If you would like to participate in a breast cancer clinical trial, you should discuss this with your cancer specialists and/or treatment team. 

A list of our current clinical trials that are open for participation is available here. Information about potentially relevant breast cancer clinical trials available across Australia and New Zealand can also be found on the Australian New Zealand Clinical Trials Registry at www.anzctr.org.au. You can also access Australian and New Zealand breast cancer clinical trials at clinicaltrials.gov.

Or you can access some clinical trials through the ClinTrial Refer App. You can search for potentially relevant clinical trials by choosing a disease type and nearest hospital through the app. ClinTrial Refer App is now available on the Apple App Store or Google Play for smartphone and tablet.