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What to do when you join a clinical trial

If you have recently been invited to join a clinical trial, you may feel both hopeful and a bit unsure at the same time. You are probably wondering; what will it be like? Is it safe? Or is this the right decision for me and my family? This guide will take you through each step of a clinical trial from the beginning to the end. We want you to feel informed and confident about your decision, and the team at Harbour Cancer will be there to support you every step of the way.

Pre-screening and eligibility for the trial

Before signing up to any trial your oncology team and any research coordinators will review whether you are a good fit for the study. Every clinical trial has a specific criteria for the safety and overall wellbeing of the patients. 

During this time the team will look at things like your medical history/records, current health and any prior treatment. They then will assess your type and stage of cancer along with any therapies you’ve previously had. Lastly, they order any extra tests or scans that might be needed.

This process is done to assess whether the study is the right fit for you. If it’s not the right fit, your doctors will talk about why and present what other options might be out there for you. If it turns out you are eligible for the trial, then the next steps start. You will need to learn about the trial in detail before you make any decisions.

Informed consent

Consent is very important for trials. You will have a talk with your oncologist, then sign supporting paperwork. You will get an explanation of what the study is about and what you will need to do. You will discuss things like:

  • The purpose of the research (what they want to find out)

  • The type of treatment (medicine or medical device) being tested

  • How often you will need to come in for treatment, scans or tests

  • The possible side-effects

  • What treatment options you have outside of the clinical trial

You will have time to think about everything and ask questions. You can also talk to your family and friends before making a decision. Once you sign the consent form it means you understand everything and agree to participate in the study. You can stop participating in the study at any time. This will not affect your care in any way.

Baseline assessments

After you give your consent there is usually a time before the study intervention starts. This is called the baseline assessment. It helps create a picture of your health before the intervention begins. You might need to:

  • Get blood tests, scans or physical exams

  • Fill out a survey about your symptoms, energy and quality of life

You will also meet your trial coordinator, who will be your main contact during the study. They will help you with your schedule, explain how to report any symptoms and help you with any challenges you might face.

Monitoring

When the study intervention starts you will have a schedule to follow. Depending on the trial, the intervention may include new medicines, new combinations of treatments, or different ways to administer treatment.

You will visit the clinic regularly for treatment and monitoring. At each visit your team will check for side-effects, take blood tests and measure how well the treatment is working.

After treatment ends

Some clinical trials include a follow-up phase, where the team will stay in touch with you for a period of time. This helps researchers understand if there are any long-term effects and makes sure your health is still being monitored.

After the clinical trial ends your regular cancer care will continue. You will still be supported by your Harbour Cancer and Wellness team, who will talk to you about your next steps.

Balancing risks with benefits

Participating in a cancer trial is a chance to try new and promising treatments before they are widely available. The benefits include:

  • Access to treatments under medical supervision

  • Extra support from a research team

  • Contributing to discoveries that might help others in the future

However there are also some risks. The new treatments might not work better than older treatments or it could cause unexpected side effects. 

Your doctors will talk to you about the risks so you can make a decision. Importantly participating in a clinical trial is voluntary and you can choose not to participate or stop at any time. This will never affect the quality of your care.

Clinical trials in Auckland

At Harbour Cancer and Wellness, clinical trials are a part of how we improve cancer treatment in New Zealand. Our research in Auckland connects patients to global innovations that they might not have access to otherwise. We can offer treatment options while still providing personalised care.

If you are interested in learning more about cancer trials in Auckland, talk to your doctor. They will explain what studies are currently available, check if you are eligible and help you decide if it is the choice for you.

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