Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)

Recruiting Observational Study
FSHD
No Placebo Group Every participant receives an active treatment — no one gets a placebo. No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Sex
Any
Study type
Observational
Participants needed
450 (estimated)
Sponsor
University of Kansas Medical Center · Other
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About This Trial
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…
Trial Locations
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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 …
Contacts

Michaela Walker, MPH

913-945-9920

mwalker20@kumc.edu

CONTACT

Leann Lewis, MSGC

585-275-7680

Leann_Lewis@URMC.Rochester.edu

CONTACT