9 common misconceptions about clinical trial participation

Connecting patients with clinical research opportunities is our mission here at Antidote, but often, we find that misconceptions can serve as barriers to achieving this goal. It’s important to carefully weigh the pros and cons of participating in a clinical trial but to do this effectively, it’s critical to have accurate information.

In this blog, we are unpacking nine of the most common clinical trial myths and sharing the reality behind them in order to provide potential participants with reliable information — read on to learn more!

9 common clinical trial myths

Misconception: I'll be treated like a guinea pig.
Fact: When enrolling patients for a clinical trial, researchers are required to take several steps to ensure that patients know exactly what a study will involve before joining. This is referred to as the informed consent process. Before a patient can be fully enrolled in a trial, site staff are required to fully explain what the study entails and provide them with the opportunity to ask any questions they may have before signing the form. Patients have the freedom to leave a trial at any time and for any reason.

In addition, patients often report that one of the benefits of clinical trial participation is the opportunity to learn more about their condition and receive personalized care from specialists in their condition. Rather than feeling like subjects, many research participants perceive themselves as active contributors in the research process, deeply engaged in shaping their care plans.

Misconception: Clinical trials are dangerous because they use untested drugs.
Fact: Before potential new treatments advance to the human clinical trial process, they undergo lab testing on animals to ensure their safety. Furthermore, depending on the phase of the clinical trial, it may have previously gone through additional testing in humans as well. Here is a brief overview of the clinical trial phases:

  • Phase 1 clinical trials are the first phase where a potential therapy is tested on humans. These trials typically enroll 20 to 100 healthy volunteers and only test for safety over the period of several months to a year.
  • Phase II clinical trials test for both safety and efficacy based on the goal of the trial. Trials in this stage can last from several months to a few years, and recruit up to several hundred patients to take part.
  • Phase III trials enroll several hundred to several thousand volunteers, and also last the longest. In fact, this testing phase can last several years as the FDA gathers thorough data about the drug's effectiveness and potential side effects.

Understanding the phase a clinical trial is in can indicate how many people have already tried the potential new treatment. Additionally, as part of the informed consent process, potential participants can learn about the side effects patients experienced in earlier clinical trial stages to determine if the study is a good fit.

Misconception: Once I join a trial, I can't change my mind.
Fact: Even after signing an informed consent form, patients are still free to leave a clinical trial at any time, for any reason. The informed consent process ensures that patients receive ongoing information to make an educated decision about whether or not to start and stay in a clinical trial, and it is their right to leave the study as they wish. When withdrawing from the trial, volunteers should let the research team know. 

Misconception: I don't want to join a trial because I'm afraid of getting a placebo.
Fact: While placebos are used in some clinical trials, for the majority of medical conditions, the potential therapy being studied will be compared against the current standard of care for that condition. This allows patients to receive appropriate treatment regardless of which study group they are placed in. Additionally, if the treatment being studied is shown to be effective, it will often be offered to all individuals who took part in the study.

Misconception: Joining a clinical trial helps people in the future, but it doesn't help patients today.
Fact: The clinical trial process takes several years, and if a treatment isn't effective for a patient, it may feel like participants only paying it forward. However, in addition to helping research and accessing potential treatments before they reach the market, clinical trial participants also report receiving quality, personalized care during the trial and learning more about their condition.

Misconception: Being in a clinical trial is expensive and isn't covered by insurance.
Fact: Clinical trial participants rarely have to pay for costs related to taking part in a trial. Research costs are covered by the drug sponsor, while doctor's visits and lab tests are usually covered by health insurance. Potential participants can discuss this directly with their trial team and health insurance carrier to understand the specific coverage that is offered for those enrolled in research.

Misconception: I don't have time to participate in a clinical trial.
Fact: The time commitment for participating in a clinical trial can vary; some trials may only require a few visits in total, while others may require participants to visit weekly for the duration of the study. To lessen this burden, some trials offer transportation services, such as paying for cabs, public transportation, or gas. Before signing up for a trial, site staff will inform participants about the trial schedule, the frequency of visits, the options for virtual check-ins, and answer any questions.

Misconception: You need to live near a major hospital to participate in a clinical trial.
Fact: In addition to major hospitals and academic research facilities, regional hospitals and smaller clinics also run clinical trials. Some clinical trials even offer compensation for patients who are traveling from farther distances to participate, particularly for patients participating in rare disease clinical trials. Plus, even on the other side of the COVID-19 pandemic, many clinical trials have continued to incorporate virtual elements into their research plans, and an increasing number of trials allow participants to participate either partially or fully remote.

Misconception: Clinical trials are only a last resort.
Fact: While some clinical trials are a choice for patients who have exhausted all other treatment options, there are also clinical trials available for patients at all different stages of their diagnosis. Some clinical trials look specifically for patients who are newly diagnosed, while others look for patients who experience particular symptoms and may have been diagnosed for many years. Because any new therapy or treatment must first go through the clinical trial process, there are many options available for individuals interested in participation.

Clinical trials play a major role in the advancement of scientific research and hold the promise of benefitting future generations. If you’ve been considering taking part in a clinical trial but are unsure where to start, try out our clinical trial search tool to find studies that are taking place in your area. Research matters, so start your clinical trial search today.