Update: Motor Outcomes to Validate Evaluations in FSHD

Posted by Friends of FSH Research on Apr 24, 2026

Report by Dr. Statland
See also Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)

The Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD) study is the largest multi-site natural history study of FSHD to date. The goal of the study is to validate strength, function and biomarker outcomes in FSHD, which will both hasten therapeutic development and improve clinical care. Also, the study aims to understand which assessments are meaningful to people with FSHD, and if certain values of these assessments help predict future motor or health outcomes. MOVE FSHD is uniquely inclusive, allowing all individuals with FSHD to participate. Including those with FSHD type 2, children, and those who are in a wheelchair.

We have enrolled more than 480 participants, with ~275 returning for 1-year visits and more than 150 returning for 2-year visits!  The study continues to enroll new participants. We are also working to add new study sites across Canada, the United Kingdom, Europe, and Asia. This is study is a huge achievement in the FSHD community, a reality that has been made possible by the support from Friends of FSH Research.