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