Clinical Trial Research Network

About the FSHD Clinical Trial Research Network

Launched in 2016 with FSHD Society funding, the FSHD Clinical Trial Research Network (CTRN) is central to accelerating treatment development. The CTRN unites top-tier research centers from all over the world that perform groundbreaking clinical research and trials. CTRN doctors and clinics also provide specialized care for FSHD and other neuromuscular conditions.

Directed by Jeffrey Statland, MD (University of Kansas), the CTRN leads vital studies to understand how FSHD changes over time and what tools should be used to measure it, including the ReSOLVE study, MOVE and MOVE+ studies, and the MOVE Peds study. CTRN sites are also involved in clinical trials of new therapies. Visit our Current Trials & Studies page to learn more.

Altogether, the CTRN is a vital resource that helps:

  • Speed up large-scale clinical research
  • Attract biopharma investment in FSHD
  • Improve patient care through best practices

The FSHD Society, along with support from the FSHD Canada Foundation and other individuals and organizations, continues to invest in the CTRN to expand and sustain its operations globally.

Visit the FSHD Clinical Trial Research Network Site

Find the CRTN location nearest you

Learn More

Current CTRN sites and principal investigators

United States

  • Duke University — Natalie Katz, MD PhD
  • Kennedy Krieger Institute, Baltimore MD — Doris Leung, MD PhD
  • Nationwide Children’s Hospital, Columbus, Ohio — Linda Lowes, PT PhD
  • Stanford University School of Medicine — John W. Day, MD, PhD
  • The Ohio State University Medical Center, Columbus, OH — Bakri Elsheikh, MD
  • University of California Los Angeles — Perry Shieh, MD PhD
  • University of California San Diego — Chamindra Laverty, MD
  • University of Colorado — Stacy Dixon, MD
  • University of Florida Gainesville — S. H. Subramony, MD
  • University of Iowa — Katherine Mathews, MD
  • University of Kansas Medical Center, Kansas City KS — Jeffrey Statland, MD
  • University of Rochester Medical Center, Rochester NY — Rabi Tawil, MD
  • University of Texas, Austin, TX
  • University of Texas, San Antonio, TX — Matthew Wicklund, MD
  • University of Texas Southwestern Medical Center — Jaya Trivedi, M.D.
  • University of Utah, Salt Lake City, UT — Russell Butterfield, MD
  • University of Washington, Seattle — Leo H. Wang, MD PhD
  • Virginia Commonwealth University, Richmond, VA — Nicholas Johnson, MD

Canada

  • McGill University – Erin O’Ferrall, MD; Angela Genge, MD
  • University of Calgary — Lawrence Korngut, MD
  • University of Ottawa — Hanns Lochmuller, MD

Europe

  • University of Milan, Italy – Valeria Sansone, MD
  • University of Nice, France – Sabrina Sacconi, MD PhD
  • Münich University – Bendikt Schoser, MD
  • Institute of Myology, Paris, France – Guillaume Bassez, PhD
  • Radboud University, Nijmegen, The Netherlands – Karlien Mul, MD PhD
  • University College London – Enrico Bugiardini, MD
  • University of Sheffield – Channa Hewamadduma, MD

Beyond North America and Europe

  • University of Melbourne, Australia – Ian Woodcock, MD
  • University of Sao Paolo, Brazil – Cristiane Moreno, MD PhD
  • Hong Kong University – Sophelia Chan, MMedSc
  • Osaka Toneyama Medical Center – Tsuyoshi Matsumura, MD PhD