FAQs - What you may want to know about clinical trials

How do I decide if I should participate in a clinical trial?

Participating in any trial is a personal decision. Before you decide, be sure you know all you can about your disease and the details of any trials for which you may qualify. Then discuss the possibilities with your doctor and family members. Your decision may be different for each trial.

What will I gain by participating?

Benefits can include:

• Normally your care will be given by prominent physicians in the field of lung disease research.
• You may experience benefits of new drugs before they are available to the public.
• You are making decisions about your own health care.
• Discoveries made through your participation may be valuable contributions to lung disease research.

What risks might I be taking?

Risks may include:

• Side effects of new drugs are usually not well understood by the doctors.
• You may end up undergoing treatment that doesn't work, or that works less well than a current treatment.
• Sometimes a new drug works for others but may not be effective for you.

What protections would I have?

When the government funds a clinical trial, they require informed consent from all participants. That means researchers must give you full details about all of the treatments, tests, possible benefits and potential risks. Once you choose to participate, you will be asked to sign an informed consent form.

What are the chances I would receive a placebo?

Lung disease trials seldom use placebos. Most are comparing a new treatment with a standard treatment; so participants will usually be one of two groups: one receiving the best known treatment for a lung disease based on results of past research and the other receiving the treatment being tested in the clinical trial.

Where would I find a clinical trial?

Sometimes trials are held at one or two specialized pulmonary care centers. But sometimes they are available through hundreds of locations at the same time. Participation is normally supervised by a team that includes your physician. He or she reports your specific results with the treatment to the pulmonary center that coordinates the trial. Then research scientists evaluate the trial with information from all the participants.

What does it means when a trial is called "blind" or "double blind"?

To protect against unintentional bias in reading results of studies, group assignments for participants are done randomly (with a computer). Research is most accurate when study groups are similar in terms of age, gender, and other important factors. Researchers may also reduce bias by making a study "blind"-that is, participants don't know which group they're in until the study is complete. A double-blind trial means the investigators also don't know which group a participant has been assigned to.

Who pays for these trials?

Some health insurance coverage does not cover treatments considered "experimental," and clinical trials are often counted among these. Be sure to check with your insurance carrier, or contact the National Heart, Lung and Blood Institute (contact information below) for other solutions.