Clinical trials are a crucial step in developing new treatments that will improve our health and protect us from disease. They allow researchers to develop increasingly effective therapies. People may participate in clinical trials for many reasons, such as to try the most advanced treatments when other options are not available or when existing treatments are not optimal, or to contribute to research that can advance science.

However, there are still many misconceptions that make people reluctant to participate. That’s why we want to debunk the top 5 myths about clinical trials.

Myth #1: I will be considered and treated as a guinea pig during the clinical trial.

Fact: Patient safety is a top priority during clinical trials.

Developing and marketing a new treatment is a long and complex process with strict procedures. Clinical trials are experiments, but before new treatments can be tested on humans, they must first undergo rigorous pre-clinical studies that can take years. In addition, clinical trials are strictly regulated and conducted in a scientifically and ethically sound manner. For each clinical trial, an independent and recognized ethics committee assesses whether the potential benefits of the new treatment outweigh the risks associated with the study. Clinical trials can only be conducted if they have been approved by such an ethics committee and by the appropriate regulatory authorities. Although it is not always possible to predict the outcome of a study, patients who participate in a study are thoroughly screened before participation and closely monitored during the study by a medical team and according to a protocol designed to minimize potential risks.

However, your personal assessment of the risks and benefits may differ. Therefore, prior to your possible participation in a clinical trial, you will receive full information during the informed consent process. You will have the opportunity to ask any questions you may have in order to form your own opinion. Ultimately, it is up to you to decide whether or not you want to participate in a clinical trial.

Myth #2: Clinical trials are the last option. I can only participate if there are no other treatment options.

Fact: You can participate in a clinical trial at any stage of your disease.

There are even clinical trials that focus on disease prevention. Even if there are other treatment options for your disease, it may be worthwhile to participate in a clinical trial that tests a new drug, non-drug treatment, procedure or medical device. You will be in contact with a specialized team of doctors and researchers and can let them know that you want a better treatment now and/or in the future. It is possible that existing treatments have little or no effect on you. In this case, it may be worthwhile to test a treatment option that is still in development. After all, participating in a clinical trial gives you access to treatment options that are not yet available on the market.

Myth #3: My doctor notifies me of any clinical trials I may participate in anyway.

Fact: Your doctor may not be aware of all the clinical trials you may be involved in.

However, you can ask your doctor to help you with your research. Your doctor may know where and how to find an appropriate study. And you can also do your own research. In fact, there are all kinds of websites that you can turn to. This website is one of them. Don’t hesitate to talk to your doctor about any trial you’re interested in, so he or she can help you determine whether or not participation in a specific study is possible.

Myth #4: I always get a placebo, never the real thing.

Fact: You don’t always get a placebo when you participate in a clinical trial. In fact, it depends on the type of study and its design.

Researchers sometimes use a placebo to compare the effectiveness of a new treatment to no treatment. But not all studies are comparative studies, and not all comparative studies have a placebo arm – a group of participants receiving a placebo. If a treatment already exists for the disease in question, the new treatment may (also) be compared to the existing treatment rather than a placebo. The use of a placebo must also be approved by an ethics committee. In clinical trials involving patients, placebos can only be used if there is not yet an effective treatment for the disease in question or if the new treatment being studied is intended to be added to an existing treatment.

In some studies, you receive the same treatment throughout the study (the experimental treatment, the standard treatment, or a placebo, depending on whether you are in the treatment or control group), in other studies you receive several consecutive treatments (for example, first a placebo, then a real treatment or vice versa). 

In open label studies you, as a participant, know which group you belong to, but in blinded studies you don’t, and in double-blind studies even the investigators and study doctors don’t know which group you are assigned to. In any case, before participating in a clinical trial, you should always be informed of the possibility of receiving a placebo. This varies from study to study and is explained during the informed consent process.  

In some cases, if you are in the control group, you may be able to participate in an open-label extension of the study so that you can continue to receive the study treatment.

Myth #5: I can participate in any clinical trial.

Fact: You can’t participate in every clinical trial.

Some studies require patients of a certain age range, others focus exclusively on women. Your eligibility for a particular study depends on the inclusion and exclusion criteria that apply to that specific study. Age, gender, type or stage of disease, pregnancy, medical history, failure or success of previous treatments, presence or absence of other medical conditions, specific allergies, general health and blood work are examples of these criteria, and they may vary by trial. To participate, you must meet all the inclusion criteria, but none of the exclusion criteria should apply to you. Whether this is the case is thoroughly investigated: first at screening with a simple questionnaire, and then at screening with additional examinations and possible tests. These steps are essential, both for the reliability of the study and for your own safety.