Tracking the Progress of My Clinical Trial After Participating

The easiest way to find out about the progress of your clinical trial is to talk to your research coordinator or your CF care doctor. If you or your child participated in an interventional trial, the study sponsor will provide information on who received the treatment and who received the placebo once the trial has been completed. Your research coordinator will be able to share this information with you.

Tracking Your Trial Online

Finding the clinical trial you or your child participated in online is not difficult, but getting the results will take time. It can take researchers at least a year to analyze the data collected during the study, depending on how complex it was.

There are several ways to keep track of your trial online:

• Track progress using the Clinical Trial Finder, where the study status is regularly updated. Study results are posted here once available.
• Sign up for email alerts. You will be notified when new studies and results are posted on the Clinical Trial Finder.
• Search for the trial on clinicaltrials.gov, a database of clinical studies conducted around the world.
• Once the analysis is complete, researchers will publish the findings in a journal article. Search for articles in the U.S. National Library of Medicine's PubMed website.
• Use the Drug Development Pipeline to view the current phase of a particular drug and see what other clinical trials have been conducted.

You can also reach out to the Clinical Trial Navigator for assistance. The Clinical Trial Navigator is a designated person who can answer your clinical research-related questions and connect you with helpful resources. They can help you track down clinical trial results and direct you to other research that may be of interest to you.

After a clinical trial is completed, the study sponsor must decide whether the results warrant further research. If not, the trial might end with your participation.

Although that particular treatment may not have succeeded, your participation will have given valuable information to researchers, who will be able to refocus their efforts on other promising therapies.

Can I Stay on the Study Drug?

In some special cases, you or your child may be able to stay on an investigational treatment once the trial is over.

If you or your child are participating in an early phase of a clinical trial, you likely will not be allowed to continue the treatment being tested. Researchers first need to analyze the study results to ensure that the treatment is safe, effective, and better than current treatments. It would not make sense to continue the potential treatment until this process can be completed.

In later phase trials, these scenarios may allow you or your child to stay on a study drug after the trial is over:

• Open-Label Use: Some clinical trials have what is called an open-label extension study, in which everyone receives the study drug. Open-label extensions typically occur after a Phase 3 clinical trial of a new treatment. Participants are invited to enroll so that additional safety information can be gathered about long-term use while the U.S. Food and Drug Administration (FDA) reviews the treatment for approval.
• Expanded Access: The study sponsor can provide expanded access (sometimes called compassionate use) to a new treatment to people with serious or life-threatening conditions who do not meet the enrollment criteria for the clinical trial. FDA regulations allow manufacturers to provide the drug as long as it does not pose unreasonable risks to the patients, and the patients do not have any other options.
• Approved Drug Being Tested for CF: Some CF clinical trials test drugs that the FDA already has approved for other uses. If the FDA has already approved the drug, then your CF doctor may be able to prescribe it to you after your participation in the trial has ended.