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Quarterly Newsletter
   Summer 2022
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Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD (ReSolve FSHD)
There are currently 12 recruiting sites in the United States and
5 in Europe.
Dyne Therapeutics is funding 5 European sites to recruit an additional 80 participants for the ReSolve FSHD study. These sites have begun recruitment this year with 16 subjects already enrolled!

We are grateful for our collaborations with other groups to help expand the FSHD CTRN and its resources!



We have reached 90% enrollment worldwide, with 100% enrollment in the US!

Thank you to all who have participated!
Poll
 
Now that many of you have completed the ReSolve study, we'd love for you to complete this anonymous poll regarding your interest in future research participation:
 
https://www.surveymonkey.com/r/MNV8GZP

Thank you!
Enrollment for MOVE FSHD Study will be end by
December 2022!
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+ 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! 
Walk and Roll with Us!
 
Several FSHD CTRN sites and local chapters are hosting walk and rolls to help raise funds for FSHD research with the FSHD Society! If you are interested in joining, please click on the location below to join the team. We'd love to see you there!
 
Kansas City, KS
Saturday, September 17, 2022 (virtual)

Rochester, NY
Saturday, September 17, 2022 at 10:00am


Columbus, OH
Saturday, September 17, 2022 at 9:00am

Salt Lake City, UT
Saturday, September 17, 2022 at 8:00am

Norfolk, VA
Saturday, September 24, 2022 at 10:00am
University of Rochester researchers and families walking for a cure in 2021
(previously known as FSHD Patient/Family Days)

Join us!

at the
Merriam Community Center
Merriam, KS 

https://www.fshdsociety.org/event/kansas-city-fshd-360/
FSHD CTRN Site Contacts 
 
Kiley Higgs-University of Kansas Medical Center
Study Project Manager
Phone: 913.945.9922

Ksims2@kumc.edu
 
Leann Lewis- University of Rochester Medical Center
Lead Clinical Research Coordinator 
Phone: 585.275.7680

Leann_lewis@urmc.rochester.edu

Katie Roath- University of Kansas Medical Center
Clinical Research Coordinator 
Phone:  913.945.9928

kroath@kumc.edu
 
Mary Yep- Kennedy Krieger Institute
Clinical Research Coordinator 
Phone: 443.923.7318

Yep@kennedykrieger.org
 
Jennifer Huynh- University of California Los Angeles
Clinical Research Coordinator 
Phone: 310.825.3264

jenniferh@mednet.ucla.edu    
 
Marco Tellez- The Ohio State University
Clinical Research Coordinator 
Phone: 614.688.7837

Marco.Tellez@osumc.edu 
 
Aliya Shabbir- University of Washington
Clinical Research Coordinator 
Phone: 206.685.2028
    
neustudy@uw.edu  
 
Sarah Moldt- University of Utah
Clinical Research Coordinator 
Phone: 801.585.9399

Sarah.moldt@hsc.utah.edu
 
Jodie Howell
-Virginia Commonwealth University
Clinical Research Coordinator
Phone: 804.592.1859
jodie.howell@vcuhealth.org
 
Veronica Stevens- Stanford University 
Clinical Research Coordinator
Phone: 650.725.4341

NeuromuscularResearch@stanford.edu

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

phebaelizabath.sunny@utsouthwestern.edu
Steve.Hopkins@UTSouthwestern.edu


Talia Strahler- 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
Thank you for your participation in our research!
The FSHD Clinical Trial Research Network

October 2019
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