In 2016, the FSHD 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, and all of the network sites are also involved in clinical trials of new therapies.
The FSHD Society will continue to invest in 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 FSHD Society, Muscular Dystrophy Association, private philanthropy, National Institute of Neurological Disorders and Stroke, Friends of FSHD Research, Institute of Myology Association, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
Current CTRN sites and principal investigators are listed below. For details and contact information, visit here.
Sites in the United States
- University of California Los Angeles — Perry Shieh, MD PhD
- University of Kansas Medical Center, Kansas City KS — Jeffrey Statland, MD
- Kennedy Krieger Institute, Baltimore MD — Kathryn Wagner, MD PhD
- University of Rochester Medical Center, Rochester NY — Rabi Tawil, MD
- Virginia Commonwealth University, Richmond, VA — Nicholas Johnson, MD
- The Ohio State University Medical Center, Columbus, OH — Samantha LoRusso, MD
- University of Utah, Salt Lake City, UT — Russell Butterfield, MD
- University of Washington, Seattle — Leo H. Wang, MD PhD
Collaborating European sites
- 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