Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
FSHDThe 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.
Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD) will have approximately 450 FSHD participants followed for a minimum of 3 years. A subset of MOVE FSHD participants, approximately 200, will participate in the MOVE+ sub-study which includes whole body MRI and muscle biopsy.
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Participation Requirements
-
Sex:
ALL -
Eligible Ages:
0 and up
Participation Criteria
Inclusion Criteria:
* Genetically confirmed FSHD (types 1 or 2) or clinical diagnosis of FSHD with characteristic findings on exam and an affected parent or offspring.
Exclusion Criteria:
* Unwilling or unable to provide informed consent.
* Any other medical condition which in the opinion of the investigator would interfere with study participation.
Study Location
University of Calgary
University of CalgaryCalgary, Alberta
Canada
Contact Study Team
Ottawa Hospital Research Institute
Ottawa Hospital Research InstituteOttawa, Ontario
Canada
Contact Study Team
University of McGill
University of McGillMontreal, Quebec
Canada
Contact Study Team
- Study Sponsored By
- University of Kansas Medical Center
- Participants Required
- More Information
- Study ID:
NCT04635891