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MOVEFSHD: Measuring Changes in FSHD

About this study 

Facioscapulohumeral muscular dystrophy (FSHD) causes muscle weakness that can change over time. Doctors need better ways to track these changes. Better measures could help doctors care for people with FSHD and test new treatments. 

MOVEFSHD will follow patients with FSHD for at least 3 years. Most patients will have study visits when they have their regular clinic visits. The study team will check muscle strength, movement, balance, and breathing. Patients will also answer questions about their health and daily life. Some patients may choose to give blood or saliva samples for research. 

Researchers want to learn which tests are best at tracking patients over time. They also want to know if early test results can help predict future needs, such as braces, walking aids, or breathing support. What we learn may help doctors plan care and decide how to measure whether future FSHD treatments work. 

Eligibility overview 

  • Child or adult with facioscapulohumeral muscular dystrophy 
  • Age 0 through adult 
  • Has FSHD confirmed by genetic testing or has signs of FSHD and an affected parent or child 
  • Does not have another health issue that would interfere with taking part in the study 

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The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.

Overview

Full title:

MOVEFSHD: Motor Outcomes to Validate Evaluations in FSHD

Study goal:

To learn how FSHD changes over time and find better ways to measure those changes

Diagnosis:

Facioscapulohumeral muscular dystrophy (FSHD)

Age:

0 through adult

Clinical trial categories:

Neurological Disorders Muscular Dystrophies and Myopathies

For physicians and researchers

Patients accepted to St. Jude must be referred by a physician or other qualified medical professional. Learn how St. Jude can partner with you to care for your patient.

 

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