The purpose of this study is to make a standardized and scalable Rasch-built clinical severity scale to help in finding genetic and environmental modifiers of disease in Facioscapulohumeral muscular dystrophy (FSHD).
Study Type
OBSERVATIONAL
Enrollment
44
University of Kansas Medical Center
Kansas City, Kansas, United States
University of Utah
Salt Lake City, Utah, United States
FSHD Clinical Severity Scale
Measure severity of FSHD.
Time frame: 1 day
Brooks scale
Measures upper extremity function.Scores on the scale range from 1-6. A score of 1 means the person can elevate their arms above their head while arms remain straight. 6 means the person cannot elevate their arms to their mouth and do not have useful function of their hands.
Time frame: 1 day
Vignos scale
Measures lower extremity function. Scores on the scale range from 1-10. A score of 1 means the person can walk and climb stairs without assistance. A score of 10 means the person is bedridden.
Time frame: 1 day
Iowa Oral Performance Instrument (IOPI)
IOPI measures lip and tongue strength by measuring the amount of pressure a person can exert on the tool.
Time frame: 1 day
Manual muscle testing
Measure person's range of motion. Scored on a scale with range of 0-5. Score of 0 means no movement. Score of 5 means the person has a full range of movement.
Time frame: 1 day
Quantitative strength testing
Time frame: 1 day
Functional testing
Time frame: 1 day
Reparatory function testing
Time frame: 1 day
Patient-reported outcome
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Time frame: 1 day