An observational study in Facioscapulohumeral Muscular Dystrophy, sponsored by University of Kansas Medical Center. Completed at 2 sites in United States. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2018-04-12.
Sponsored by University of Kansas Medical Center · Observational
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).
548 studies on the registry are indexed under Muscular Dystrophies; 89 are open to participants now.
This study's enrollment of 44 is below the median of 69 across 179 observational studies indexed under Muscular Dystrophies.
Browse Muscular Dystrophies studies →University of Kansas Medical Center is the lead sponsor of 483 studies on the registry; 113 are open to participants now.
Of its 38 completed or terminated interventional studies of FDA-regulated products, 24 (63%) have results posted.
Counted across the registry records on this site, refreshed daily.
Particpants with genetically verified FSHD types 1 and 2.
Exclusion Criteria:
Participants with FSHD-1 or FSHD-2. No intervention is given to participants. Participants will undergo series of tests and procedures in order to make a standardized and scalable Rasch-built clinical severity scale.
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
Time frame: 1 day
This study is completed, as verified in Apr 2018. You cannot join it, but the record below documents what was studied.
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University of Kansas Medical Center