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      Clinical trials are key before a potential treatment can get to families. A clinical trial is a scientific experiment, not a medical treatment. In a clinical trial, a potential therapy, a drug that has been thoroughly investigated in the laboratory (for example, in a test tube or mouse), is tested in human beings for safety and efficacy. Drug developers must provide data to the Food and Drug Administration (FDA) or its counterpart in other countries, compelling evidence that the drug is safe enough for its intended use and delivers a therapeutic benefit.

      Have you volunteered to join a patient registry? Are you interested in making arrangements to donate tissue during surgery or upon death through a tissue donation registry?

      The National Institutes of Health website ClinicalTrials.gov provides easy and free access to information on clinical studies. After identifying a trial that you are interested in, the next step is to contact the study coordinator listed on the page and ask for details about enrolling.

      Have you been involved in clinical trials? What was your experience, and would you do it again? Do you have any tips or suggestions for people who are going to participate?

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