Why participate in clinical trials? For many volunteers, a trial offers a chance to try a treatment that is not yet available to the public, along with regular check-ins from a dedicated research team. Others join because current treatments have not worked well for them, or because they want their experience to help the next person with the same condition. Every trial also involves risks and time commitments, and the right choice depends on your health, your goals, and the specific study.
This guide walks through the potential benefits and the real downsides, explains the protections built into every trial, and gives you a list of questions to bring to your first conversation with a study team. If you are new to medical research, start with our overview of what a clinical study is and how the different types and phases work.
Key takeaways
People participate in clinical trials to gain access to investigational treatments, receive close monitoring from a research team, and help improve care for future patients. Trials also carry risks, including side effects and the chance a treatment will not help. Ethics review and informed consent protect participants, and you can leave a trial at any time.
Why People Choose to Join a Clinical Trial
Volunteers come to clinical research for different reasons, and many have more than one. Some have tried several treatments without the relief they hoped for and want to explore another option. Some want a closer level of attention to their symptoms than a busy primary care schedule allows. Others are motivated mainly by the idea of contributing to research, especially when a family member or friend lives with the same condition.
There is no single right reason to participate. What counts is that you understand what the study involves and make the decision freely, without pressure from the research team, your family, or financial need.
Potential Benefits of Participating in a Clinical Trial
The benefits below are possibilities. No trial can guarantee that you will personally improve, and the consent process will explain which benefits, if any, the researchers expect.
Access to Investigational Treatments
Clinical trials test treatments that are still being studied, which means participants may receive a medication or therapy before it is widely available. For someone whose symptoms have not responded to standard options, that access can be a meaningful reason to consider a trial.
Keep two things in mind. An investigational treatment may work better than current options, about the same, or not as well. And in many trials, some participants receive a placebo or a standard treatment instead of the study drug, so joining does not guarantee access to the new treatment.
Close Monitoring From a Research Team
Trial participants attend scheduled visits where trained staff track symptoms, side effects, and overall health. That structure can mean more frequent check-ins than many people get in routine care, and a clear point of contact if something changes between visits.
This monitoring exists to collect accurate data and keep participants safe. It works alongside your regular healthcare, and most trials encourage you to keep seeing your own doctor.
Helping Future Patients
Every treatment available today exists because earlier volunteers took part in research. Participants help researchers learn whether a treatment works, who it works best for, and what side effects to watch for.
Participation also shapes who benefits from new treatments. A 2022 report from the National Academies of Sciences, Engineering, and Medicine found that women and many racial and ethnic groups remain underrepresented in clinical research, which limits how well results apply to everyone. When people from a wide range of backgrounds take part, the findings are more likely to reflect the patients who will eventually use the treatment.
Study-Related Care and Compensation
In many trials, the study medication and study-related visits and tests are provided at no cost to participants. Some studies also pay participants for their time or reimburse travel costs such as parking and mileage. Details vary widely, so ask the study team exactly what is covered before you enroll.
Payment is not treated as a medical benefit. FDA guidance on paying research participants describes it as a recruitment incentive and asks ethics boards to review the amount and schedule so it never pressures anyone into joining. The guidance also recommends that payments build up over the course of a study, so a participant who leaves early is still paid for the part they completed.
Risks and Downsides to Consider
Honest information about risk is part of making a good decision. These are the most common downsides volunteers weigh.
- Side effects. Investigational treatments can cause side effects, some mild and some serious. Because the treatment is still being studied, some side effects may not be known yet.
- The treatment may not help. You may receive a treatment that does not improve your symptoms, or you may be assigned to a placebo group. Your symptoms could stay the same or get worse during the study.
- Time and scheduling. Trials often require more visits, tests, and questionnaires than routine care. Some studies last several months or longer.
- Changes to your current treatment. Some protocols limit certain medications during the study. Any change should happen only under the guidance of the study doctor and your own prescriber.
- Uncertainty after the study ends. Access to the study treatment usually ends when the trial does, unless the study offers an extension or the treatment is later approved.
It helps to put these risks in context. A Cochrane systematic review published in 2008 compared patients who took part in randomized trials with similar patients who received similar treatments outside of a trial. The authors found no strong evidence that participating, by itself, led to better or worse outcomes. In other words, the risks and benefits come mostly from the specific treatment being tested, which is why understanding each study’s details is so useful.
| Potential benefit | What to keep in mind |
| Access to a treatment not yet widely available | It may not work for you, and you may be assigned to a placebo or comparison group |
| Frequent monitoring by a research team | Visits take time and may be more frequent than routine care |
| Study medication and study visits often provided at no cost | Coverage varies, so confirm what is included in writing |
| Compensation for time or travel in some studies | Payment is an incentive, never a reason to accept risks you are uncomfortable with |
| Contributing to research that helps future patients | Results take years, and one study rarely answers every question |
How Clinical Trials Protect Participants
Modern research protections trace back to the Belmont Report, a 1979 federal document that set out the ethical principles for research involving people. It calls for respecting each participant’s right to make their own decisions, minimizing harm, and distributing the burdens and benefits of research fairly. U.S. research regulations and the work of institutional review boards grew out of those principles.
For you as a participant, those principles show up as specific rights. Under federal informed consent regulations (21 CFR 50.25), the consent form for an FDA-regulated trial has to explain, among other things:
- The purpose of the research, how long you would take part, and which procedures are experimental
- Reasonably foreseeable risks or discomforts, along with any expected benefits
- Other treatment options that might be available to you outside the study
- How the confidentiality of your records will be protected
- Whether any compensation or medical treatment is available if you are injured, for studies with more than minimal risk
- Who to contact with questions about the research, your rights, or a research-related injury
- That participation is voluntary, and that you can stop at any time without penalty or loss of benefits you are otherwise entitled to
You will receive a copy of the consent form to keep. If new information comes up during the study that could affect your willingness to continue, the team must share it with you. For a closer look at how ethics boards and safety monitoring committees oversee each study, see the safety section of our guide to what a clinical study is.
What to Know About Placebos
The possibility of receiving a placebo is one of the most common concerns people raise. A placebo is an inactive substance designed to look like the study treatment, and it helps researchers tell whether improvements come from the treatment itself or from other factors.
Not every trial uses a placebo. Some compare a new treatment with an existing one, and others give every participant the study treatment. When a placebo is part of the design, the consent form will explain your chances of being assigned to each group. Participants in a placebo group still receive the same visits and monitoring as everyone else, and many protocols describe what happens if a participant’s symptoms worsen significantly during the study.
Is a Clinical Trial Right for You? Questions to Ask Before You Join
A good study team welcomes questions and gives you time to think. Consider bringing this list to your screening visit, along with a family member or friend if that would help.
- What is the purpose of this study, and what phase is it in?
- What are my chances of receiving a placebo or a comparison treatment?
- What side effects have been seen so far, and how will you monitor for them?
- How many visits are involved, how long does each one take, and how long does the study last?
- Will I need to change or pause any of my current medications?
- What costs are covered, and is there compensation for time or travel?
- Who do I call if I have a problem between visits, including after hours?
- How will my personal and medical information be protected?
- What happens when the study ends? Can I continue the treatment if it helps me?
- Will I learn the results of the study?
It is also reasonable to talk the decision over with your own doctor, who knows your history and can weigh the study against your other options.
Participating in Mental Health Research
Deciding whether to join a psychiatric study can feel especially personal. Many volunteers in mental health trials are people whose depression, anxiety, or other symptoms have not improved enough with the treatments they have tried so far. A trial may offer another option to explore, alongside structured support from a team that checks in on symptoms regularly.
A few steps can make the experience smoother. Let your therapist or psychiatrist know you are considering a study so they can help you weigh it. Ask the study team how your current treatment fits into the protocol, and never stop a medication on your own. If it would help, bring a trusted person to the consent visit to listen and ask questions with you.
Mental health studies typically include regular safety check-ins about mood, sleep, and thoughts of self-harm. These questions are standard, and they give the team a chance to respond quickly and connect you with care if your symptoms worsen.
Frequently Asked Questions About Participating in Clinical Trials
Do you get paid to participate in clinical trials?
Some clinical trials pay participants for their time, and many reimburse travel costs such as parking or mileage. The amount varies by study and is reviewed by an ethics board to make sure it is fair and not coercive. The consent form will list any payments and when you will receive them.
Are clinical trials safe?
Clinical trials follow strict federal rules and are reviewed by independent ethics boards before and during the study. Those safeguards lower risk, but no trial is risk-free, and investigational treatments can cause side effects. The study team will explain the known risks of a specific trial before you agree to join.
Can I keep seeing my regular doctor during a trial?
Yes, and most study teams encourage it. Let your doctor know you are in a trial and share the name of the study medication or procedure, since it may affect other care decisions.
Will my health insurance be billed?
It depends on the study. Study-specific medications and procedures are often covered by the study sponsor, while routine care you would receive anyway may be billed to insurance as usual. Ask the study team to explain costs in writing before you enroll.
What happens when a clinical trial ends?
Your participation usually ends with a final visit, and the team will talk with you about next steps for your care. Some studies offer continued access to the treatment through an extension study. You can ask whether and how the study results will be shared with participants.
Taking the Next Step With the Lehigh Center for Clinical Research
Choosing to participate in a clinical trial is a personal decision, and it deserves clear information and time to think. The best place to start is a conversation with your own doctor and with a study team that can answer your questions about a specific trial.
You can browse the clinical studies now enrolling at the Lehigh Center for Clinical Research or reach out to our research team to talk through whether a study might fit your needs. Asking questions never commits you to joining.
Medical disclaimer: This article is for general educational purposes and is not a substitute for professional medical advice, diagnosis, or treatment. Always talk with a qualified healthcare provider about your individual health questions and before making any changes to your care. If you are in crisis or thinking about harming yourself, call or text 988 to reach the 988 Suicide & Crisis Lifeline.
Sources
- National Academies of Sciences, Engineering, and Medicine. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. The National Academies Press; 2022. doi:10.17226/26479.
- U.S. Food and Drug Administration. Payment and Reimbursement to Research Subjects: Guidance for Institutional Review Boards and Clinical Investigators. 2018.
- Vist GE, et al. Outcomes of patients who participate in randomized controlled trials compared to similar patients receiving similar interventions who do not participate. Cochrane Database of Systematic Reviews. 2008. doi:10.1002/14651858.MR000009.pub4.
- U.S. Department of Health and Human Services, Office for Human Research Protections. The Belmont Report.
- Electronic Code of Federal Regulations. 21 CFR 50.25: Elements of informed consent.
