The CTRN is enrolling participants for a new study, Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD). It aims to:
Finished ReSolve and want to move on to a new study?
Join our MOVE FSHD Study!
- 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!