FAQs on FSHD Clinical Trials and Research Studies
Understanding and Participating in Clinical Trials & Research Studies
Continued advances in basic mechanistic, translational and clinical research and understanding of facioscapulohumeral muscular dystrophy (FSHD) depend greatly on patient involvement. Ultimately, our understanding of FSHD and how to develop treatments for it relies on data, findings and information that researchers, scientists and physicians obtain from basic and translational research studies and clinical trials. You can help by joining and offering to participate in these studies.
After identifying some trial options, the next step is to contact the study research staff and ask questions about specific trials.
What is a Clinical Trial?
The following frequently asked questions are found at Understanding Clinical Trials at ClinicalTrials.gov site and provide detailed information about clinical trials. This information may be helpful when deciding whether to join a trial.
What is a clinical trial?
What is it Like to Participate in a Clinical Trial?
Several FSHD patients who participated in a clinical trial of a myostatin inhibitor drug, and the trial’s principal investigator, Kathryn Wagner, M.D., Ph.D., wrote about their experiences in the Spring, 2008 FSH Watch. To read these articles, click HERE.
How to Find Clinical Trials
To find a clinical trial with keyword “FSHD,” please click HERE.
To find a clinical trial with keyword “facioscapulohumeral muscular dystrophy,” please click HERE.
To find a clinical trial with keyword “Muscular Dystrophy,” please click HERE.
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