Rasch-analysis of Clinical Severity in FSHD
- Conditions
- Facioscapulohumeral Muscular Dystrophy
- Registration Number
- NCT02766985
- Lead Sponsor
- University of Kansas Medical Center
- Brief Summary
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).
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 44
- Genetic confirmation of FSHD (either FSHD-1 or FSHD-2)
- Do not understand English
- Unable to provide informed consent
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method FSHD Clinical Severity Scale 1 day Measure severity of FSHD.
- Secondary Outcome Measures
Name Time Method Quantitative strength testing 1 day Brooks scale 1 day 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.
Vignos scale 1 day 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.
Manual muscle testing 1 day 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.
Iowa Oral Performance Instrument (IOPI) 1 day IOPI measures lip and tongue strength by measuring the amount of pressure a person can exert on the tool.
Patient-reported outcome 1 day Functional testing 1 day Reparatory function testing 1 day
Trial Locations
- Locations (2)
University of Utah
🇺🇸Salt Lake City, Utah, United States
University of Kansas Medical Center
🇺🇸Kansas City, Kansas, United States