Quarterly Newsletter
   Winter 2022
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This newsletter will be focused on all
FSHD Clinical Trial Research Network updates, including current studies' progress, new studies, and new CTRN developments!
13 in the United States
3 in Canada
6 in Europe

We are working on adding more site in the US sites, England and Brazil!
The main focus on the FSHD CTRN is to get sites around the world ready to participate in clinical trials.
Researchers from the Myotonic Dystrophy CTRN, the Limb-Girdle Muscular Dystrophy CTRN, and the FSHD CTRN meet annually as part of the Muscular Dystrophy Research Network (MDCRN) to present study data, train in person, and discuss next steps. Advocacy groups and industry representatives also attend. This meeting creates terrific opportunities for communication and collaboration!
Notable Findings from our Meeting
-We are able to measure disease progression in a 1 to 2 year period
-The Electrical Impedance Myography (EIM) test is able to measure fat in muscle to indicate a muscle's health
-Any physical activity is beneficial
   -Do what you like and you're more likely to keep doing it
   -More is NOT better
   -Low weights and high repetitions (3 x 25 reps) for 20 
    minutes two to three times per week has shown to have an
   -Start low and go slow so you do not hurt yourself
We are still recruiting for the MOVE FSHD Study!
Enroll today!

Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD) aims to:
  • Hasten drug development for FSHD
  • Improve care delivery by creating a standard protocol that will help predict outcomes such as the need for orthotics, ambulation aides, and respiratory support.
We will recruit 450 participants with FSHD. Visits are designed to occur in conjunction with your normal clinical visits, about once or twice a year. You will be followed over the course of 2 years.

Who is eligible? Anyone with FSHD! If you do not have genetic confirmation, you can still participate, but you have to at least have a family member who is also affected. You do not need to be ambulatory. Children under 18, women who are pregnant or may become pregnant, and those who are currently participating in clinical trials can also participate!

Those who participated in the ReSolve study will be asked to connect your data with both studies so that we have more long-term data.

This study will be collaborating with the Peter Jones Lab, the FSHD Society and Friends of FSH Research.  

If you are interested in participating, please contact your local CTRN site (listed at the end of this newsletter).

Here is also a quick Fact Sheet for more information! 
MOVE FSHD Study Update
  • over 200 subjects are enrolled
  • 12 pediatric subjects are enrolled
  • 10 are enrolled in MOVE+ sub-study
  • 50 of these subjects rolled over from the ReSolve FSHD study to provide long-term data
MOVE+ Sub-study
We will be enrolling 200 of the MOVE FSHD Study subjects for a sub-study, which will include muscle biopsy and MRI. If you are already enrolled in MOVE, you can tell your study coordinator that you are also interested in participating in this sub-study, but it is not required.

Inclusion criteria:
  • Enrolled in MOVE FSHD
  • Between 18-75 years of age
  • Symptomatic limb weakness
  • Able to walk 30 feet without the support of another person (participants are able to use orthotics, walking sticks, and canes)
  • Both TA muscles should have a MMT score of between 2-5 on the MRC scale
  • Lower extremity muscle accessible for needle muscle biopsy (our expectation is that 60% will meet MRI STIR+ criteria)
Exclusion criteria:
  • Unwilling or unable to provide informed consent.
  • Severe cardiac, respiratory, or orthopedic conditions that preclude safe testing of muscle function
  • Use of anticoagulants such as warfarin or novel oral anticoagulants
  • Malignancy with ongoing treatment with chemotherapeutic agents or anabolic agents
  • Use of immunosuppressants including prednisone within 6 months
  • Pregnancy
  • Recent or ongoing infection
  • Presence of contraindication to performance of MRI: pacemaker, metallic foreign body in eye, brain aneurysm clip (unless documented as MRI compatible)
  • Any other medical condition which in the opinion of the investigator would interfere with study participation.
Here is also a quick Fact Sheet for more information! 
FSHD CTRN Site Contacts 
Michaela Walker-University of Kansas Medical Center
Study Project Manager
Phone: 913.945.9920
Leann Lewis- University of Rochester Medical Center
Lead Clinical Research Coordinator 
Phone: 585.275.7680

Rebecca Clay- University of Kansas Medical Center
Clinical Research Coordinator 
Phone:  913.945.9928
Mary Yep- Kennedy Krieger Institute
Clinical Research Coordinator 
Phone: 443.923.7318
Dennis Fernando- University of California Los Angeles
Clinical Research Coordinator 
Phone: 310.825.3264     
Marco Tellez- The Ohio State University
Clinical Research Coordinator 
Phone: 614.688.7837 
Aliya Shabbir- University of Washington
Clinical Research Coordinator 
Phone: 206.685.2028  
Sarah Moldt- University of Utah
Clinical Research Coordinator 
Phone: 801.585.9399
Jodie Howell
-Virginia Commonwealth University
Clinical Research Coordinator
Phone: 804.592.1859
Veronica Stevens- Stanford University 
Clinical Research Coordinator
Phone: 650.725.4341

Sean Evans and Steve Hopkins - University of Texas Southwestern
Clinical Research Coordinators
Phone: 469.625.5508; 214.648.9380

Alyssa Avilez- University of Colorado Denver
Clinical Research Coordinator 

Victoria Sims- University of Florida
Clinical Research Coordinator
Phone: 352.733.2436

Isabelle Fisette-Paulhus and Jessica MacGregor- Ottawa Hospital Research Institute
Clinical Research Coordinators
Phone: 613-798-5555 ext. #19070
613-798-5555 ext. #19627

Smita Patel- McGill University
Sr. Clinical Research Coordinator
Phone: 514.398.4097

Wishing you all a wonderful and safe holiday season!
Copyright © 2022 FSHD Clinical Trial Research Network, All rights reserved.

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