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July 2012

Clinical Trials: Are You "In the Know?"

Clinical trials that test potential drugs and therapies in people with cystic fibrosis are a major part of CF research. Right now, more potential cystic fibrosis therapies are in development than ever before, and CF clinical trials are taking place all across the country.

If you have never participated in a clinical trial, or are thinking of enrolling your child in one, you may have lots of questions. What are the benefits of participating? Is it safe? What will happen before, during and after the trial?

Clinical research teams have a series of steps in place to help equip people with CF and their families with the information they need when deciding whether a clinical trial is right for them. This process is called “informed consent.”

Watch as Dr. Scott H. Donaldson explains.

Before joining any clinical study, you will receive an informed consent form with the key facts about a trial. You will have the opportunity to discuss the study in detail with your or your child’s CF care team.


Austin, 12, receives his CF care at the Johns Hopkins University care center in Baltimore, Md.

Here are some questions you can ask your care team to help you get all of the facts:

  • What is the purpose of the study?
  • Why do researchers think that this particular drug or treatment might work?
  • How long will the trial last?
  • How often will I or my child need to go to the study site?
  • What will happen with my health information that is collected during the trial?
  • Are there any known risks of the study drug?
  • What are the benefits of participation?
  • What will happen during the study visits?

Clinical trial participants are strictly volunteers, so you should never feel obligated to participate in a study. It is important to talk with your CF care team to help find a clinical trial that is right for you. Informed consent is a learning process that allows you to be the judge of whether a particular study is a good match for you or your child.

For more information about clinical trials, check out the following resources:

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