Although more and more clinical trials are being launched by public and private researchers every year, there are still a great many misconceptions among patients regarding how clinical trials work and what they entail. Read on to learn the facts behind some of the most common myths surrounding clinical trials.
Myth Number 1: Clinical trials are dangerous.
One of the most common and most persistent myths about clinical trials from a patient perspective is that participating in a clinical trial could be dangerous. While some level of risk is always involved in a clinical trial, it is important to remember that all drugs have already completed an extensive and rigorous testing process by the time they reach the clinical trials stage. Additionally, many regulatory measures are in place to protect patient safety.
Furthermore, participants receive comprehensive medical attention throughout a trial and are carefully and closely observed for safety concerns. Any potential risks will be clearly explained during the informed consent process. Trial participants also have the opportunity to raise concerns about safety and risk at any time.
Myth Number 2: If I want to participate in a clinical trial, I will have to take an experimental drug or an untested therapy.
Participating in a clinical trial doesn’t necessarily mean participating in drug testing. Some clinical trials are observational, meaning that researchers simply monitor patients, without drugs, in order to gain insight and data on their present natural health state. Other clinical trials involve behavioral alterations, such as changes to diet or exercise habits, rather than drugs.
Myth Number 3: Some patients in clinical trials are given ineffective therapies deliberately.
Placebos, which are products that look like the investigational drug but do not contain any active ingredients, are an important tool in clinical research. They are used to provide a control group against which investigational therapies can be measured.
However, the decision about whether to give clinical trial participants a placebo is based on careful examination of how serious an illness is, what other treatments are currently available, and a number of other ethical considerations. A placebo would not be used in a study if that would mean risking the health and safety of participants by denying them effective therapy.
For instance, placebos are rarely used in clinical trials for serious illnesses such as cancer. If they are used as a control against an experimental treatment, it is because there is no existing standard treatment that a patient would otherwise be taking.
Myth Number 4: Clinical trials already have enough volunteers and don’t need my participation.
Clinical trials often need hundreds or even thousands of participants. This means that depending on the health condition and the treatment being investigated, the clinical trial you’re considering could be in serious need of volunteers.
For example, a huge majority of clinical trials for Parkinson’s disease (about 85 percent) face delays due to lack of participants, and 30 percent of these trials are unable to recruit any participants at all. This means that many potentially meaningful treatments might never be developed because they weren’t able to be tested.
Myth Number 5: If I decide to participate in a clinical trial, I won’t be able to change my mind.
Many patients are not aware that they have the right to withdraw from a clinical trial at any time and for any reason. Furthermore, even if you leave a trial, the research team is still responsible for providing you with appropriate care and follow-up, so your withdrawal will not jeopardize your health. However, it is important to tell the research team if you are thinking about withdrawing from a trial because some medications must be stopped while under a doctor’s supervision.
Myth Number 6: Participating in a clinical trial is expensive.
Clinical trial participants never have to pay for tests, procedures, or drug costs that are part of the study: these are known as “research costs.” However, some additional “patient care” costs may be incurred, such as travel, hospital stays, or tests that would be conducted even if you were not participating in the trial.
Health insurance may not pay all participation costs, but it typically provides the majority of clinical trial participants with at least some reimbursement for patient care costs. If you are not sure about what costs might be your responsibility or how much they are likely to be, talk to the clinical trial research team and to your health insurance provider. This will help you determine what the financial implications of a clinical trial might be for you before making a final decision about your participation.
Myth Number 7: My doctor will let me know about any clinical trial opportunities that might suit me.
Your doctor is certainly a source of information about potential clinical trials that you might be eligible to participate in, but they are by no means the only source. Indeed, due to the large number of clinical trials being conducted, they may not know about all the available studies that could benefit you.
Fortunately, there are a number of other ways to find out about clinical trials seeking participants. These include searchable online databases like the National Institutes of Health clinical trials lists (available at www.clinicaltrials.gov) and information from patient advocacy organizations.