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Quarterly Newsletter
   Spring 2021
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Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD (ReSolve FSHD)

There are currently 8 recruiting sites in the United States and 3 sites in Europe.  With grant funding from Dyne Therapeutics, we are in the process of adding 3 additional sites in Europe.  


36% of our participants have completed the study! 

We are so thankful for all of the participants who have remained in this very important study, even through COVID-19 and adding an additional visit.  THANK YOU to all of our amazing patient volunteers!  
Thank You!

We wanted to thank all of you who completed our
"COVID-19 Impact on Muscular Dystrophy Survey" in May 2020 and in February 2021. We hope to have the data from the first survey published soon that we will share with you. We are currently analyzing the data from the second survey.
Recent Publications
Dr. Samantha LoRusso from the Ohio State University recently published our data on the importance of patient engagement in protocol development and information dissemination of the ReSolve study. You can read the article HERE.

She will be presenting this data at the American Academy of Neurology Annual Meeting in June!
Dr. Leo Wang from the University of Washington spearheaded the publication of a recent study where we learned that muscles were more likely to progress or worsen if they showed intermediate fat fraction on MRI at baseline. Read the whole article HERE.

We are continuing this research in the current BiLAT study, with patients at the University of Washington, Kansas University Medical Center, and University of Rochester Medical Center.

MOVE FSHD 
 
The CTRN is enrolling participants for a new study, Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD). It 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 250 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 3 years. Assessments may be done remotely during the COVID-19 period.

Who is eligible? Anyone with a FSHD diagnosis! You do not need genetic confirmation. 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!

We hope many participants in the ReSolve study enroll in this study so that we can follow you long term.

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).
Maintaining Study Integrity While Ensuring Patient Safety
 
Due to the COVID-19 pandemic, we have made some changes to maintain the integrity of this important study, while making sure that patient safety is our first priority.

1) Visits that cannot be completed on-site will be done remotely. You will receive communication directly from your site about when this will happen.

2) We have added another visit at 24 months (Visit 5) to allow participants to complete their study on-site, if possible. This visit will be the same as Visit 3 as it will include the DEXA scan.

3) For Visits 3, 4 and 5, we have extended the visit window by 3 months to allow these visits to be rescheduled with more flexibility. Your Site Coordinator will be in contact with you about when these will be rescheduled.

 
Thank you for your commitment in helping us has been a challenging time for all of us and we appreciate your continued commitment to this very important study!
The FSHD Clinical Trial Research Network (CTRN)
The FSHD CTRN has expanded!  With the help of the FSHD Society, the FSHD CTRN has added 4 additional sites in the United States: 
  • Stanford University- Dr. John Day 
  • University of Texas Southwestern- Dr. Jaya Trivedi 
  • University of Colorado Denver- Dr. Matt Wicklund
  • University of Florida- Dr. Sub Subramony 
While these four new sites are not participating in the ReSolve Study, they will be participating in the MOVE FSHD Study! Please see site contact information below for future studies.
Click above to see our Facebook page!
We will be featuring publication alerts of relevant FSHD articles,  Physical Therapy videos, and highlighting FSHD researchers.

Like it and turn on all notifications (under Following) so that you don't miss anything. Please feel free to invite anyone else to like the page.

Check out our
FSHD CTRN website

Don't worry! If you did not get a chance to enroll in the ReSolve study, there are other options available.
Contact your local site to see what other studies may be available to you! 
ReSolve FSHD 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 
 
Mory Mehrtash- University of Washington
Clinical Research Coordinator 
Phone: 206.685.2028
    
morymeh@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

 
FSHD CTRN Site Contacts 

Veronica Stevens- Stanford University 
Clinical Research Coordinator
vsteven@stanford.edu 

Jovana Valdez- University of Texas Southwestern
Clinical Research Coordinator
Jovana.Valdez@UTSouthwestern.edu 

Brianna Blume- University of Colorado Denver
Clinical Research Coordinator 
brianna.blume@cuanschutz.edu 

Victoria Hope- University of Florida
Clinical Research Coordinator
victoria.hope@neurology.ufl.edu 


 
Thank you for your participation in our study!
The ReSolve FSHD Team
Copyright © 2021 FSHD Clinical Trial Research Network, All rights reserved.


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