FSHD Orofacial Study Summary

See grant Development of a novel measurement tool of oral strength in FSHD

Dr. Johnstone with patient

The most prominent symptom of FSHD is orofacial weakness. Researchers at the University of Washington are investigating new instruments to measure the strength of the oral muscles in FSHD. The goal of this research is to study how oral strength is related to disease progression and related quality of life. This information will inform further research and interventional trials to treat and cure FSHD. Recruitment is beginning in October 2020 and the goal is for 30 participants (ages >18) with a known diagnosis of FSHD. The study will take place at the University of Washington or in-home visits can be accommodated if in the greater Seattle area. The study takes about 30 minutes per visit to complete and currently we are looking to test once yearly for the next 2 years. Enrolled participants will be asked to complete several questionnaires and will have their lip strength measured with two types of instruments. In addition to collecting facial strength measurements on those with FSHD, unaffected people are also needed to serve as a control group. Interested family members or friends are encouraged to participate. Please contact Laura Johnstone at lmj@uw.edu or 206-949-0580 if you are interested in participating or learning more about this opportunity.

See the Recruitment Flyer.