CML Hub__>__Getting involved in clinical research

Getting involved in clinical research

__7 February 2022

Getting involved in clinical research

Perhaps you’ve been asked by your doctor to consider taking part in a clinical trial. Maybe you’ve come across an advertisement that caught your attention. Or perhaps you’d just like to learn more about what’s involved?

Either way, there’s a lot to weigh up. Knowing as much as possible can help you decide whether taking part in a clinical trial could be right for you. So reading this article is certainly a step in the right direction.

What is a clinical trial?

A clinical trial (also known as a clinical study) is the final stage of a very long research process. Clinical trials are carried out by scientists and doctors to gain a better understanding of the best way to care for people with conditions such as chronic myeloid leukaemia (CML).[NCI,ACS]  

Clinical trials often take place to investigate promising new treatments, or different treatment combinations. They aim to find out which treatments are safe and effective, and how they compare to existing options.[NCI,ACS]

Why join a clinical trial?            

Potential benefits include:

  • The medication being trialled could be found to be safer or more effective than other treatments. This could benefit participants, and/or others in the future.[NCI]
  • Participation in clinical trials contributes towards helping future generations. This is because the findings of each trial help to improve our knowledge about treating CML.[NCI,ACS]
  • For some, it’s the best option available. For example, if previous treatments haven’t worked as well as expected, clinical trials can offer the chance to receive a new treatment[CNET]
  • Participants in clinical trials are usually closely monitored. Some people find this is reassuring, and really value the additional care, but others might see this as an inconvenience.[ACS]

Common concerns

There is a risk of side-effects:

  • There’s a risk of side effects when taking any But because doctors don’t know as much about new medicines as they do about established treatments, the risk may be higher in clinical trials.[ACS]
    • Despite this, it’s important to remember that there are plenty of safety measures in place to minimise the risks. [NCI]

You might not receive the medication that’s being trialled

  • By taking part in a clinical trial you are not guaranteed to receive the ‘new’ treatment. Usually, participants are given an equal chance of receiving either the ‘new’ treatment or an established treatment.[NCI1,ACS]
    • Remember that established treatments may be just as good as, or perhaps even better than, the ‘new’ treatment
    • There’s also a possibility that you will receive the new treatment, but it won’t work for you, even if it helps others.

Talk to your healthcare team

If you think that joining a clinical trial could be an option, start by talking to your healthcare team, to see if they know of any that might be suitable for you. If not, it may be worth getting a second opinion.

You could also do your own research. A good place to start is the https://clinicaltrials.gov/ site, which is a database of clinical trials that are being conducted all around the world. Talk to your doctor if you find one that you think might be suitable.

Have a look at our guide to talking to your doctor.

Informed consent

If you do find a trial that seems right for you, you’ll go through a process called ‘informed consent’. During this process, you learn important information about the trial, to help you make an educated decision about whether to participate. If you agree to take part, you’ll be given an informed consent form to read and sign. Remember that you can leave the study at any time, for any reason, even after you’ve signed the form.[NCI1]

Choosing to join a clinical trial is something only you can decide, with support from your healthcare team and loved ones. Clinical trials are not right for everyone. But for many, they offer hope, and an opportunity to help improve the lives of future generations.

References

[ACS] American Cancer Society. Clinical Trails: What You Need to Know. Available at: https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials.html. Accessed November 2021.

[CNET] Cancer.net. Leukemia – Chronic Myeloid – CML: About Clinical Trials. Available at: https://www.cancer.net/cancer-types/leukemia-chronic-myeloid-cml/about-clinical-trials. Accessed November 2021.

[NCI] National Cancer Institute. Taking Part In Cancer Treatment Research Studies. Available at: https://www.cancer.gov/publications/patient-education/cancer-treatment-research-studies. Accessed November 2021.