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Clinical Trial Information

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IDF often receives requests for information about clinical trials, which are research studies in volunteers to address specific health issues. These studies may be designed to learn more about a specific disorder, identify the causative gene, discover new therapies or improve existing treatments. By participating in clinical trials, patients can be more involved in their own healthcare and potentially gain access to the newest treatments before they become widely available. Participation in clinical trials is also an important way to help others affected with a similar disease. Volunteer participation increases the body of information available to find out more about the causes, special features of the disorder and the most effective treatments for these rare diseases.

If you are interested in learning more about current clinical trials in the U.S., check out the website offered by the U.S. National Institutes of Health and developed by the National Library of Medicine: The site lists information about clinical trials in an easy to search format. Searches can be carried out by diagnosis, treatments, geographic locations and various combinations of keywords.

Although the IDF does not review and/or endorse any particular clinical trial listed on this site, all trials on this site have received approval by institutional review boards. Frequently, these trials have also been authorized by the U.S. Food and Drug Administration, particularly if the trial involves testing responses to new pharmaceutical agents or new uses for existing treatments.

Choosing to participate in a clinical trial is an important personal decision. As with any decision concerning your disease and care, you should talk to your physician before joining any trial.

To find out more about current clinical trials, visit: