European centers to collaborate on FSHD ReSOLVE study

Three European centers have agreed to collaborate with the FSHD Clinical Trial Research Network on its NIH UO1 grant-funded projects, notably ReSOLVE. In doing so, they join eight US members of the CTRN.

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).

Patients who wish to volunteer or be considered for future research studies and clinical trials are encouraged to contact a site that is conveniently located for them. Here are the FSHD CTRN and collaborating sites, with the site principal investigators:

• University of California, Los Angeles ─ Perry Shieh, MD PhD
• University of Kansas Medical Center, Kansas City ─ Jeffrey Statland, MD
• Kennedy Krieger Institute, Baltimore, MD ─ Kathryn Wagner, MD PhD
• University of Rochester Medical Center, NY ─ Rabi Tawil, MD
• The Ohio State University, Columbus ─ Samantha LoRusso, MD
• University of Utah, Salt Lake City ─ Russell Butterfield, MD PhD
• Virginia Commonwealth University, Richmond ─ Nicholas Johnson, MD MS-CI
• University of Washington, Seattle ─ Leo H. Wang, MD PhD
• 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