Research Volunteer FAQs

Why should I join a health research study?

People join research studies for all kinds of reasons.

If you’re healthy, you might want to help find better treatments for diseases that affect people you care about. Your participation helps scientists learn new things that could help millions of people in the future.

If you have a health condition, joining a study helps others like you—but it can also help you. You might get to try a new treatment or receive extra care and attention from the research team.

Your involvement matters

For a long time, many research studies didn’t include enough people from different backgrounds. This meant some treatments didn’t work as well for everyone. Today, researchers are working hard to fix this. They want to make sure new treatments work for all of us—no matter our background, where we live, or how much money we make.

When you join a study, you help researchers:

• Understand diseases better
• Create treatments that work for more people
• Improve healthcare for everyone
• Make health policies better

Bottom line: Health research gives us a chance to work together toward a healthier future for everyone. Your participation makes a real difference.

What is health research?

Health research (sometimes called medical research) helps us understand how our bodies work, why we get sick, and how to stay healthy.

Each research study is designed to answer specific questions that can improve our health and wellbeing—both as individuals and as communities.

What are the different types of health research?

There are several kinds of health research studies. Some are pretty simple, like filling out a survey. Others might ask you to try a medication or come to several clinic appointments. Here are the main types:

Observational studies follow the same group of people over time to see what happens to their health. These studies can help researchers come up with new ideas to test.

Epidemiological studies look for patterns of disease in large groups of people. For example, doctors track flu outbreaks around the world, then use what they learn to create each year’s flu vaccine.

Intervention studies test whether changing certain behaviors can improve health. For instance, a study might look at whether exercising more helps with weight, diabetes, or heart disease.

Prevention studies look for ways to keep people from getting sick in the first place. These studies often include people who are at higher risk for a certain disease. If the prevention method is a drug or vaccine, it’s tested in a clinical trial (see below). If it involves changing behavior, it’s an intervention study.

These types of studies often support what we call social and behavioral health research.

Clinical trials test new treatments to find the best ways to prevent or treat disease. This could be a new drug, vaccine, medical device, or therapy. Clinical trials only begin after lab and animal studies show the new treatment is safe and likely to work in people. Volunteers in clinical trials are closely watched throughout the study.

Clinical trials happen in stages called phases (1-4). If you’re thinking about joining a clinical trial, the research team will explain which phase the study is in and what that means for you.

How are people chosen for studies?

Each health study is designed to answer a specific question, so researchers need to find the right people to help answer it. Healthy volunteers (sometimes called “healthy controls”) are just as important as people with medical conditions.

Whether you’re a good match for a study depends on several factors:

Inclusion criteria is a list of things that researchers are looking for in participants. This might include your age, a specific health condition, or being part of a group the researchers want to learn more about (like women, children, or people from certain communities).

Exclusion criteria is a list of things that would make the study unsafe for you or affect the study results. For example, you might not be a match if you’re taking certain medications or can’t attend all the required appointments.

These criteria help protect your safety and make sure the study produces reliable results.

What information do researchers collect from study participants?

Every study is different. Researchers might collect medical information (like your height and weight) or samples (like blood, saliva, or tissue).

All your information and samples are stored securely in places called biorepositories or data banks. Your name is removed to keep your information private. Sometimes other researchers may use this information for future studies. If this is possible, your research team must tell you:

• What information will be kept confidential
• What might be shared
• How it will be shared

The research team will also explain exactly what information they’ll collect and when they’ll collect it—whether that’s before and after a treatment, or at multiple points throughout the study.

Important: There are strict rules researchers must follow about collecting and protecting your information.

How can I be sure the research study is safe?

Before any study can begin, researchers must submit their plans to an Institutional Review Board (IRB). The IRB is a group of people whose job is to protect research participants. They review and approve all study plans to make sure:

• The study is conducted honestly and ethically
• Participants will be treated with respect
• You’ll receive clear information so you can make an informed decision about joining
• Any risks or discomforts are kept to the absolute minimum

The IRB continues to oversee the study after it starts. They check that researchers follow the approved plan, review any changes, and make sure you receive all the information you need to understand any risks involved.

Bottom line: Multiple safeguards are in place to protect your safety, privacy, and rights throughout the research process.

Do people get paid for research?

Participants do sometimes get a little money or other compensation- like a gift card- for their time or travel. Usually it is not a lot.

Do I have to be part of the research?

No. Your participation is completely your choice.  Participants who have agreed to participate in a study can also withdraw any time.

Also, if you do not want to be part of a study, it will not change the health care your doctor gives you in the future or your relationship to the institution conducting the study.

What else should I ask the study team?

Since each study is a little different, it is important for participants to ask their study team about what exactly they are agreeing to do.

Examples of these questions are:

• Are there any study medications involved?
• How long does the study last?
• Will I get paid for my time, especially if I have to take time off of work, or get childcare?
• Are there any direct benefits for me?
• Will this impact my insurance?
• When the study is done, will I get information so I know what happened in the study?

Prefer to learn by watching a short video? We have you covered.

The U.S. Department of Health and Human Services created a series of videos that explain:

• The basics of clinical research
• Other types of research- like social and behavioral studies
• How research volunteers are protected
• Participants sharing their own research experiences

Content created by Office for Human Research Protections (OHRP). Content last reviewed December 20, 2023.

• Watch

How do I participate?

If you are ready to join the UI Health Research Registry, you can create a registry profile for you or a loved one.

You might also want to visit national registry websites, like ResearchMatch.org, to learn about studies outside of Illinois.

If you are interested in studies on a particular condition, have more questions or are unsure what studies might be right for you, talk to your doctor or a community health worker about ways you can participate.

What if I am acting on behalf of a child, elderly parent or other loved one?

People can sign up children or adults who may not be able to make their own healthcare decisions for research studies. However, you do need to be a parent, legal guardian or have the authority to make healthcare decisions for the person you wish to enroll.

What if I have more questions?

We’re here to help! Feel free to contact our friendly staff to learn more about taking part in health research at healthresearch@uic.edu.