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Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)

NCT04635891

RecruitingN/A

Sponsor: University of Kansas Medical Center

Conditions: FSHD

Countries: United States, Brazil, Canada, United Kingdom

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. 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 reachable workspace, as well as optional muscle biopsy and wearable device (US participants only).

Eligibility overview

Sex: ALL

Healthy volunteers: No

Study type: OBSERVATIONAL

Eligibility 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.
Locations (21)
  • Los Angeles, California, United States
  • Stanford, California, United States
  • Aurora, Colorado, United States
  • Gainesville, Florida, United States
  • Iowa City, Iowa, United States
  • Kansas City, Kansas, United States
  • Baltimore, Maryland, United States
  • Rochester, New York, United States
  • Durham, North Carolina, United States
  • Columbus, Ohio, United States
  • Austin, Texas, United States
  • Dallas, Texas, United States
  • San Antonio, Texas, United States
  • Salt Lake City, Utah, United States
  • Richmond, Virginia, United States
  • Seattle, Washington, United States
  • São Paulo, Brazil
  • Calgary, Alberta, Canada
  • Ottawa, Ontario, Canada
  • Montreal, Quebec, Canada
  • Sheffield, South Yorkshire, United Kingdom