In 2016, the FSH Society helped to launch the nationwide FSHD Clinical Trial Research Network. Located at leading neuromuscular centers, these sites function as a “lab without walls” with uniform standards for assessing patients and sharing data. The ReSOLVE study is currently being run on the network.
The current CTRN sites and principal investigators are:
- University of California Los Angeles — Perry Shieh, MD PhD
- University of Kansas Medical Center — Jeffrey Statland, MD
- Kennedy Krieger Institute, Baltimore — Kathryn Wagner, MD PhD
- University of Rochester Medical Center — Rabi Tawil, MD
- Virginia Commonwealth University— Nicholas Johnson, MD
- The Ohio State University Medical Center — Samantha LoRusso, MD
- University of Utah — Russell Butterfield, MD
- University of Washington, Seattle — Leo H. Wang, MD PhD
Collaborating European sites are:
- Radboud University, Nijmegen, The Netherlands – Karlien Mul, MD PhD, and Baziel van Engelen, MD PhD
- University of Milan, Italy – Valeria Sansone, MD
- University of Nice, France – Sabrina Sacconi, MD PhD
The FSH Society will be working with the CTRN to expand the network as needed to additional sites both within the U.S. and in Europe.
Funding sources for the network and the studies running on the network include: the FSH Society, Muscular Dystrophy Association, private philanthropy, National Institute of Neurological Disorders and Stroke, Friends of FSH Research, Institute of Myology Association, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).