The survey is closed. This was a survey conducted by The University of Texas Southwestern Medical Center for the MSU Myositis Journey and Burden of Disease Study 

To understand how we can improve the quality of life for those affected by Myositis, we must first understand the burdens this disease inflicts on patients, caregivers, and families.  The MSU Pain Study, to be published this year in Rheumatology, was a significant step in addressing the burden of muscle pain in Myositis and posed important questions about the profile of muscle pain in myositis and pain treatments used in myositis. This will be followed up separately.   

This survey is being done to understand how myositis affects other aspects of life such as your emotional and mental well-being and that of your caregiver. We will ask about how myositis affects your social life, fatigue, and financial well-being. We will also ask about your myositis journey related to diagnosis and management.   

We are inviting participants to complete a survey to gather their perspectives on how they were diagnosed with Myositis and the impact it has on their lives as well as on those that assist in caregiving.   

This survey will take approximately 10-15 minutes. Your data will remain confidential, the survey is completely voluntary, and you will not receive compensation. You may skip any question you do not feel comfortable answering and may exit the survey at any time.   

If you have any questions regarding the survey, please contact Dr. Salman Bhai, at  

The survey will be open from May 3 -20, 2022. We at MSU appreciate your support in this effort.  Your data and experiences drive research.  



Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support


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