Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)

MoveFshdExamThe primary goal of this study is to hasten therapeutic development for FSHD and improve care delivery. The study will open the inclusion criteria to include people left out of earlier studies based on age, FSHD type, or ambulatory status. The funding from Friends allows the current US Clinical Trial Research Network (CTRN) sites to enroll in this study, and thereby triple the number of participants. Opening this up to existing US CTRN sites leverages the infrastructure funds already in place for the Resolve study, and allows an expansion of the MOVE FSHD enrollment for a smaller investment than would otherwise be possible. In addition, as mentioned in a previous article, Dr. Jones has committed to provide saliva methylation analysis for each of the MOVE FSHD participants, allowing the Jones lab to obtain clinical information for further validation of the technique, and providing a biomarker for this study.

The intention is that the MOVE FSHD protocol serve as a model for standardized outcome collection which can be performed in a clinic setting (or telemedicine). A flexible clinic-based protocol like MOVE FSHD is essential in a time of crisis like the SARS CoV-2 pandemic. Such a clinic platform for FSHD research can serve as a framework to support remote assessments or home encounters.

See grant Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)