Clinical Trial Research Network

The FSHD Clinical Trial Research Network (CTRN), launched in 2016 with funding by the FSHD Society, is a cornerstone of our strategy to accelerate the development of treatments. They provide excellent medical care and are leading the way in research.

CTRN-Apr2022

Comprised of leading international FSHD research centers, the CTRN functions as a “lab without walls” with uniform standards and training for assessing patients and sharing data. CTRN co-directors are Rabi Tawil, MD, of the University of Rochester, and Jeffrey Statland, MD, of the University of Kansas. A vitally important part of the research infrastructure, the CTRN:

  • Enables fundamental research to be done at scale and faster;
  • Attracts biopharmaceutical companies into the FSHD field;
  • Improves patient care by enforcing best practices and standards.

The ReSOLVE study, the largest study ever conducted in FSHD, was done on the network, and all of the network sites are also involved in clinical trials of new therapies.  MOVE and MOVE+, are also running on the network to understand which measures taken by a doctor during a clinical visit translate into meaningful changes in patients' daily lives.

The FSHD Society, along with support from the FSHD Canada Foundation, and other individuals and organizations, continue to invest in the CTRN to expand the network as needed to additional sites both within the U.S. and in Europe.

In addition to being academic research centers with expertise in FSHD clinical research or in conducting neuromuscular clinical trials, CTRN sites are also care centers that offer more specialized care to FSHD patients.

Find the CTRN location nearest you

Funding sources for the network and the studies running on the network include: the FSHD Society, FSHD Canada Foundation, Muscular Dystrophy Association, private philanthropy, National Institute of Neurological Disorders and Stroke, Friends of FSHD Research, Institute of Myology Association, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), Fulcrum Therapeutics, and Dyne Therapeutics.

Learn more about the individuals working within the FSHD CTRN

Michaela Walker has been working for the past three and a half years as a Project Manger for the FSHD CTRN and the MOVE FSHD study at the University of Kansas. She says the most rewarding part of her work is “Getting to meet patients and hearing their stories. Also, seeing the work we have done come to fruition and being used by researchers and industry partners across the globe.”
Sarah Moldt, CRC is a research coordinator for the Utah Program of Inherited Neuromuscular Disease group (UPIN) and has been involved in FSHD research for 3 years. She says, "I’m most excited for the sheer amount of ground making discoveries made every day, from a better understanding of one of the most, if not the most genetically complicated muscular dystrophy, to the big influx of trials coming down the pipeline."
Leann Lewis is the FSHD Research Study Coordinator at URMC, and has been working in the field for over six years. She says, "I have worked with many different patient populations and FSHD is by far the nicest, easiest to work with population. They make my job easy! And I have wonderful, supportive colleagues who I learn from everyday."
Osniel Gonzalez Ramos, BS, CRC works at UT Southwestern Medical Center, and has been working in the field for two years. He believes the greatest opportunity in the near future regarding FSHD and FSHD research is collaboration. He describes the most rewarding part of his work as getting the opportunity to "advance medical therapy and cures for diseases."
FSHD 360 Conference

Learn about the latest research, managing your condition, and empowering our community!

FSHD 360 Conferences offer the latest in research, condition management, and personal empowerment for those living with facioscapulohumeral muscular dystrophy.  Multiple conferences are held each year, in cities across the US, with experts in the field - most often in partnership with Clinical Trial Research Network sites. 

Learn More & See the upcoming FSHD 360 Schedule

Current CTRN sites and principal investigators:

Sites in the United States

  • Kennedy Krieger Institute, Baltimore MD — Doris Leung, MD 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 Colorado — Matthew P. Wicklund, MD
  • University of Florida Gainesville —  S. H. Subramony, 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 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

CTRN Sites in Europe

  • University of Milan, Italy – Valeria Sansone, MD
  • University of Nice, France – Sabrina Sacconi, MD PhD
  • University College London - Enrico Bugiardini, MD
  • Münich University - Bendikt Schoser, MD
  • Institute of Myology, Paris, France - Guillaume Bassez, PhD

Collaborating European sites

  • Radboud University, Nijmegen, The Netherlands – Karlien Mul, MD PhD
Visit the FSHD Clinical Trial Research Network Site
CTRN Details & Contact Information