Participate in FSHD research: UW/Children's research study

Research collaboration between UW Medical and Seattle Children's Research

Researchers at the University of Washington and Seattle Children's Hospital are seeking volunteers for a study on FSHD.

Within the next few years researchers are expecting that there will be clinical trials to study new treatments for FSHD. In order for those studies to be done well, researchers will need ways to measure how well a treatment is working in patients with FSHD. The purpose of this study is to develop those kinds of measures. We are looking for participants ages 18-75.

This study involves 1-2 visits to the UW and Seattle Children's. The visits will be repeated in 12 months.

 If you choose to participate in the study researchers will ask you to

  • Give permission to access your medical records and genetic tests .
  • Have a small amount of blood drawn for research tests
  • Complete a questionnaire
  • Have your muscle strength and functioning tested
  • Have an MRI of your lower body
  • Have a muscle biopsy (a small amount of muscle removed from your leg with a needle)

Subjects will be compensated $150 for their time and travel expenses for each of the two yearly visits. If a return visit is needed to complete study procedures, an additional

$50 will be provided.

If you are interested in helping with this research or learning more about it, please call Chris Budech, Clinical Research Associate at (206) 987-6022 or email at