Purpose of this Study
In this study, each child will be followed for two years and will come for a visit every six months. At each visit, a physical therapist will guide the child through movements and activities to see how their muscles are working.
The child will also have an MRI. An MRI is a special camera that takes clear pictures inside the body, including the muscles.
Who Can Participate?
Eligibility
This study is for children who are 5 to 17 years old and have FSHD that has been confirmed by a genetic test. Children in the study need to be able to follow directions. They may walk on their own or use a wheelchair. They also must not have anything in their body that would make an MRI unsafe for them.
Age Range
5-17
Sex/Genders
Male (cisgender)
Female (cisgender)
Non-binary or gender fluid
Looking for Healthy Participants
No
What is Involved?
Description
This study will help researchers understand how FSHD changes as children grow. The information they learn will help them plan future studies that will test new treatments for children with FSHD.
Locations
Duke University Hospital
Other
Visit Timing
Weekdays
Compensation
Yes
Spanish Materials Available
No
Study Details
Full Title
Motor Outcomes to Validate Evaluations in FSHD
Study Website
Principal Investigator
Natalie
Katz
Protocol Number
PRO00119457
NCT ID
NA
Phase
N/A
Enrollment Status
Pending Open to Enrollment