Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
The primary goal of this proposal is to collect motor and functional outcomes specific to FSHD over time. By collecting measures specific to FSHD, this will help ensure the best level of clinical care is being provided. Also, the hope is to speed up drug development by gaining a better understanding of how having FSHD impacts motor function and other health outcomes (i.e. breathing, wheelchair use, etc.) and how big a change in motor function would be clinically meaningful to those with FSHD.
- Eligible Ages
- All ages
- Eligible Genders
- Accepts Healthy Volunteers
- Genetically confirmed FSHD (types 1 or 2) or clinical diagnosis of FSHD with characteristic findings on exam and an affected parent or offspring.
- Unwilling or unable to provide informed consent. - Any other medical condition which in the opinion of the investigator would interfere with study participation.
- Study Type
- Observational Model
- Time Perspective
|Study Visits||Patients will receive standard of care as determined by their treating physician. Study visits will occur per standard of care.|
- University of Kansas Medical Center
Study ContactMichaela Walker, MPH