We are still recruiting for the MOVE FSHD Study!
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!