What is a clinical trial?
Before a potential treatment can get to our families, it has to go through a clinical trial. A clinical trial is a scientific experiment. It is not a medical treatment. In a clinical trial for 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.
Clinical trials are conducted in phases
Enroll in a Clinical Study
The National Institutes of Health website ClinicalTrials.gov provides easy and free access to information on clinical studies. Our list below includes all FSHD studies that are currently enrolling volunteers, including some that are not in clinicaltrials.gov. 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.
In addition to studies listed below, you can volunteer to join a patient registry or make arrangements to donate tissue at surgery or upon death through a tissue donation registry.