Participate in FSHD Clinical Trials, Research and Tissue Donation

 

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.

What is a Request for Participants or a Research Call?

Many scientists and physicians are doing research that requires medical information and biomaterials, such as blood and tissue donations, from people with FSHD.  For example, tissue samples are used to create cell lines and cell systems to study drug treatments.  Samples from a surgically removed tissue might be used to study how FSHD cells progress from a healthy to an unhealthy state.  Some studies don't need blood or tissue samples but are ‘natural history' studies that monitor a person's FSHD over time to understand how the disease progresses. In other studies, volunteers might be interviewed or asked to complete surveys about the quality of life, pain, wellness and living with FSHD, or have a non-invasive medical procedure such as an eye exam or a magnetic resonance imaging (MRI) scan. All of these studies and others will eventually help doctors better understand, treat and cure FSHD.