We are still recruiting for the MOVE FSHD Study!
Enroll today!
 

Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD) aims to:

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+ 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 
 

 

Veronica Stevens- Stanford University 
Clinical Research Coordinator
Phone: 650.725.4341
NeuromuscularResearch@stanford.edu

Sean Evans and Steve Hopkins - University of Texas Southwestern
Clinical Research Coordinators
Phone: 469.625.5508; 214.648.9380
Sean.Evans@utsouthwestern.edu
Steve.Hopkins@UTSouthwestern.edu

Alyssa Avilez- University of Colorado Denver
Clinical Research Coordinator 
Phone:303.724.4644
neuroresearch@cuanschutz.edu

Victoria Sims- University of Florida
Clinical Research Coordinator
Phone: 352.733.2436
Victoria.Sims@neurology.ufl.edu

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

Smita Patel- McGill University
Sr. Clinical Research Coordinator
Phone: 514.398.4097 
smita.patel@mcgill.ca

Jonathan Street- Royal Hallamshire Hospital
Sheffield, United Kingdom
Clinical Evaluator and Study Coordinator
j.street1@nhs.net

Dr. Frederica Montagnese- Friedrich-Baur-Institute
Klinikum der Universität LMU Munich
frederica.montagnese@med.uni-muenchen.de