6 Things to Know Before Joining a Clinical Trial

Clinical trials are research studies involving people. They’re often used to test new treatments, medical devices, and interventions. But clinical trials can’t happen without willing participants. And there are many reasons why you might want to volunteer. 

Perhaps you’re looking for new ways to treat your health condition. Or maybe you want to contribute to medical research to help others. No matter the reason, it’s important to feel comfortable with the clinical trial process. So, what should you know before enrolling? Let’s discuss.

1. Your participation is completely voluntary

Your participation in a clinical trial is completely voluntary. This is true no matter your reason for joining one. This also means you can leave the clinical trial at any time.

In some cases, your healthcare provider may recommend joining a clinical trial. This can happen if you’ve exhausted all or most treatment options for your health condition. And there may be a clinical trial that seems like a good fit. But that doesn’t mean you have to participate. The decision is entirely up to you.

The FDA requires informed consent from all clinical trial participants. This requires researchers to provide you with information on the trial’s purpose, potential benefits and risks, and more. It’s important that you fully understand this information when making your decision to participate.

Remember: If you don’t feel comfortable with the trial, you’re not obligated to participate. You have the right to ask any questions or bring up any concerns you have to the researcher before, after, and during the trial. 

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2. Understand the purpose of the clinical trial

There are many different purposes for a clinical trial. For example, some clinical trials may be evaluating safety of a new medical product. Others may be figuring out the best dose of a medication or how well it works to treat a condition. 

This information should be disclosed to you up front. But if it’s not clear, here are some questions to ask to better understand the purpose of the clinical trial: 

• Why is this research being done?

• What do researchers hope to learn?

• Who will benefit from this study? 

• Is everyone going to receive the treatment? Or will there be people who don’t?

It’s also important to understand which phase(s) of the trial you’re participating in. That’s because different phases may have different objectives. For example, there are typically four clinical trial phases for a new medication:

• Phase 1: Judges safety and dosage in a small group of healthy people.

• Phase 2: Evaluates efficacy and side effects in a larger group of people with the condition being treated.

• Phase 3: Efficacy and safety is studied in a large group of people with the condition. This is the last step before a drug manufacturer applies for FDA approval.

• Phase 4: Safety and efficacy is monitored in thousands of people after the new medication is approved.

3. Understand the potential benefits and risks

With any clinical trial, there are potential risks and benefits. Being fully aware of them, and how they could affect you, can also help inform your decision to participate. 

Some possible benefits include: 

• Treatment: If the trial is successful, your condition may be treated or improved.

• Medical care: Your medical care will be monitored by researchers, and you may receive healthcare more frequently.

• Incentives: Most times, clinical trials will compensate you for participating. This can help you manage some of the costs relating to your care.

Some possible risks include: 

• Adverse reactions: Since the treatment is still being studied, there’s a chance you may experience adverse reactions. Adverse reactions are unexpected negative effects from treatment. Researchers will continue to monitor you for these. 

• Placebo: If the clinical trial is “placebo controlled,” there’s a group of people who don’t receive the treatment (control group). You may be placed into the control group.

• Inconvenience: Participation may take up more of your time than expected. And you may end up having to travel, too.

While the potential benefits and risks should be disclosed to you, it never hurts to ask questions. For example, you can ask what’s being done to minimize risks, side effects, and adverse reactions during the trial.

4. Know how your privacy and confidentiality will be protected

Over the course of a clinical trial, you may end up providing blood samples, test results, and other information to researchers. But what happens with this information, and how is it used?

Researchers are required to disclose this information as part of informed consent. For example, they should tell you how they’ll keep your information confidential during the trial. Not all information may be traced back to you. But they should tell you how they’ll secure records that can be.

Your confidentiality and privacy should be protected in any clinical trial. In fact, there are federal protections in place about it. These protections detail how your information can be used and shared for research purposes. This applies to information obtained before, during, and after the trial.

5. Make sure you can meet the requirements to participate

Clinical trials aren’t open to everyone. Most times, there are certain requirements you must meet to be able to participate. 

Examples of these can include:

• Time commitments: Trials can be anywhere from a few weeks to a few years long. Make sure you’re able to commit to the full length of the study. Regular visits to a medical facility may also be required, which can be a significant time commitment.

• Travel commitments: Trials can occur in a variety of settings including clinics, labs, or hospitals. Confirm that you’ll have reliable transportation to get there as often as needed.

• Characteristics of the participant: This includes your age, sex, and the type and/or stage of your health condition. Your medical and treatment history can be a factor, as well. For example, having a certain medical condition may disqualify you from enrolling. 

6. Know about any potential costs involved

You may be wondering if you’ll need to pay money to participate in a clinical trial. Most times, the answer is no. Clinical trials are usually funded by the government or by private companies. And many costs related to the trial are also covered. 

But it’s important to understand if you’ll be asked to pay for anything, and, if so, the estimated cost. This also includes the cost of any care that could arise from being harmed during the trial. Indirect costs — such as child care you might need — should also be considered.

Usually, you’ll be compensated for your participation in the trial. The amount you’ll be paid may depend on different factors, such as trial length, phase, and the seriousness of the condition being treated. When making your decision, it’s a good idea to factor in any potential costs against the compensation you’ll receive. 

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Written by:

Aashna Gheewalla, B.S.

Aashna Gheewalla, B.S. was an editorial intern on the GoodRx Health team. She has a B.S. in Public Health from Rutgers University.

Edited by:

Alyssa Billingsley, PharmD

Alyssa Billingsley, PharmD, is the director of pharmacy content for GoodRx. She has over a decade of experience as a pharmacist and has worked in clinical, academic, and administrative roles.

Reviewed by:

Stacia Woodcock, PharmD

Stacia Woodcock, PharmD, is a pharmacy editor for GoodRx. She earned her Doctor of Pharmacy degree from the University of Kentucky and is licensed in New York and Massachusetts.

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