Quarterly Newsletter
   Spring 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 61% enrollment worldwide, with 100% enrollment in the US!

Thank you to all who have participated!
A new year and new opportunities!

As it becomes safer for us to gather in groups, we have been able to meet more often in person at various conferences to share ideas to benefit the FSHD community!
Dr. Jeffrey Statland presents on the ReSolve FSHD results.

The week of March 14, 2022 FSHD CTRN researchers gathered in Nashville, TN for the Muscular Dystrophy Association Clinical and Scientific Conference. It was a great opportunity to learn about advances in muscular dystrophy research and clinical care.
Here are some abstracts from the 2022 MDA Conference regarding FSHD that may interest you:
Multiple FSHD CTRN researchers will be presenting at the American Academy of Neurology Annual Meeting, held in Seattle, WA from April 2 to 7, 2022.

FSHD CTRN researchers will also be presenting their research at the FSHD Society's Annual International Research Congress.

Finished ReSolve and want to move on to a new study?

Join our MOVE FSHD Study!

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 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 3 years. Assessments may be done remotely during the COVID-19 period.

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!

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).

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 
Kiley Higgs-University of Kansas Medical Center
Study Project Manager
Phone: 913.945.9922
Leann Lewis- University of Rochester Medical Center
Lead Clinical Research Coordinator 
Phone: 585.275.7680

Katie Roath- University of Kansas Medical Center
Clinical Research Coordinator 
Phone:  913.945.9928
Mary Yep- Kennedy Krieger Institute
Clinical Research Coordinator 
Phone: 443.923.7318
Jennifer Huynh- 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

Osniel Gonzalez Ramos- University of Texas Southwestern
Clinical Research Coordinator
Phone: 214.648.2926 

Talia Strahler- University of Colorado Denver
Clinical Research Coordinator 

Katiana Fenelon - University of Florida
Clinical Research Coordinator
Phone: 352.733.2436
Thank you for your participation in our research!
The FSHD Clinical Trial Research Network

October 2019
Copyright © 2022 FSHD Clinical Trial Research Network, All rights reserved.

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