Participate in FSHD Research

Posted by Friends of FSH Research on Dec 15, 2019

Recruitment for this study has reached capacity.

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 3 visits to the UW and Seattle Children’s over 3 years.

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

Subjects will receive $75 for each visit. In some cases, reimbursement towards travel expenses may be available.

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.

• Give permission to access your medical records and genetic tests
• Have 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 legs with a needle)

Subjects will receive $75 for each visit. In some cases, reimbursement towards travel expenses may be available.

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.