For Teens

Why Participate in Research?

The decision whether to participate in a clinical study may be a difficult one.

Before deciding to join a study, it’s important to get information from people like the principal investigator and research coordinator, family members and friends, your cardiologist, and your regular doctor.

The Decision Process

Some hospitals or clinics offer the services of a social worker or patient advocate who is not directly connected with any study and who can talk with as you decide. There are also online resources such as this website and the National Institutes of Health’s Clinical Research Trials and You website to help you make the decision that is right for you.

There is no “right” or “wrong” answer about participating in research, only the answer that seems right for you.

Questions to Consider

Some studies involve observing your health over time and others test a medication, treatment or device. Most studies are required to give you a consent form before you agree to join a study. This form describes the research and many of your questions will be answered there. Even if a formal consent form is not required, you should consider what questions you want answers to. Clinical study documents have a lot of information, but there are questions that you may still have. And you need to ask them, and ask them again, if the answers aren’t clear to you. When you meet with a member of the research team, you will want to listen carefully and ask several questions about the study.

To begin, some questions you may ask are:
  • Why is this study being done?
  • Why do I fit the needs of the study?
  • Why do the doctors think this treatment may work?
  • Has this treatment been tested before?

Some studies might divide the participants into groups. For example, if a new medicine is being tested, one group might get the “experimental medicine” and another group might get a medicine that is already used in treatment. In this way, doctors can see if the medicines work differently. Sometimes there is no treatment for a certain problem. In this case, one group might get an “experimental treatment” and another group might get a placebo (no treatment).

In either type of study, the treatment you receive will likely be decided at random. Randomization is a fancy way of saying by chance. It’s similar to rolling dice or flipping a coin. It is often the best way that researchers have to end up with study groups that will be similar in age, ethnicity, and other characteristics, in order to better compare the results at the end of a study.

Questions you might ask are:
  • How will the study team decide who gets the experimental treatment?
  • What are the possible risks and side effects in this study?
  • How will my safety be monitored in this study?
  • Could my condition get worse and what happens if it does?
  • How will I know if the treatment is working?
  • How can I contact the research team if I have questions?
  • Will I ever find out if I received a placebo (no treatment)?

It is important to know what your responsibilities are once you enter a study. You will need to make sure that you are following the study instructions in order to keep yourself safe and for the study to have meaningful results. You will also want to know if there will be extra costs or visits to the study site.

Some questions to ask are:
  • How many people are in the study and when did it start?
  • How long will the study last?
  • How might this affect my daily life?
  • How many extra visits will I need to make to the hospital or study site?
  • Will I be reimbursed for parking, travel expenses, meals, or childcare?
  • Who will pay for the experimental treatment?
  • Who will pay for additional treatment needed due to possible side effects of the study?
  • Will it cost me anything to be in the study?
  • Who do I contact if I have questions?

You will want to consider all of your choices when deciding if you should enter a research study or not. You do not have to join a research study unless you want to. You should never feel pressured or forced to join. Make sure you have ALL of the information you need to make the best choice for you.

You may consider asking:
  • What are my other choices if I choose not to participate in the study?
  • Can I join the study later if I change my mind?
  • Will I be able to participate in other studies about my condition?
  • Will my medical care change if I don’t participate?

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