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True Cost of FSHD

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The FSHD Society is pleased to tell you about our new survey called “The True Cost of FSHD.” This is one of the most important and urgent surveys we have ever done.  

The “True Cost of FSHD” survey is the first of its kind in the United States. Its purpose is to learn about the “hidden” costs to patients with FSHD and their family members. Here are some examples of hidden costs: 

  • Medical expenses that are unreimbursed (not paid for by health insurance). These include co-pays, nonprescription medications, etc.
  • Living expenses that someone without FSHD would not have to pay. For instance, this could be costs to install a ramp, safety bars, or convert a van to accommodate a wheelchair.
  • Extra costs or reduced opportunities in regard to school and work. 
  • Unpaid caregiving help from family members.  
  • Other expenses and costs to patients with FSHD and their family.  

We will publish the collective results to inform the government, insurance companies, and other decision makers, providing guidance on the true costs of living with FSHD and the difference that treatments can make to people’s lives. 

We invite you to be part of the True Cost of FSHD survey. 

Sign up to participate

We will be recruiting survey participants through July 16 and launch the survey shortly thereafter. If you know others with FSHD that might be interested in participating, please invite them to sign up and join in this important effort!

Enroll in the True Cost of FSHD Survey

Q. Who should be part of this survey?  

  • We hope to include 500 to 1,000 households in the United States. That means people who have FSHD along with family members who live with them. (We are advising patient advocates in other countries on how to conduct their own studies.)

 Q. Who will see my answers to survey questions?  

  • The information that you share is anonymous. It will not include your name, diagnosis, or other personal information. Your anonymous answers will only be used only by the researchers conducting this study. for study purposes. 

 Q. What types of questions are on the survey?  

  • There will be questions about the health of you and your family,  your income, and how FSHD has made a difference in school, at work, or in other parts of  your life. There also will be questions about the cost of healthcare services that you need now or expect to use soon.  

 Q. How long does it take to complete this survey? 

  • It should take about one hour to complete the whole survey. But you need not complete it all at once. The survey has 5 sections: 
    1) Demographics, general background
    2) Detailed financial information
    3) Questions about FSHD and health
    4) Work, education, income
    5) Quality of life (EQ-5D-5L questionnaire)

 Q. When do I sign up to be part of this survey?  

  • The FSHD Society will start recruiting participants on June 18, 2022. The last date to sign up is July 16, 2022.  

 Q. What happens after I sign up for this survey? 

  •  Soon after the recruitment period ends on July 16, everyone who signed up will get an email that has a link to the survey along with directions about how and when to complete it.  

 The “True Cost of FSHD” survey is an important way to make clear the hidden expenses of living with this disease. Yes, it will take a lot of work from many people to make this happen. We hope that includes you.  

Whether you have FSDH or are a family member of someone who does, you are an expert in what it is like to live with this disease. That includes its hidden costs.  This is critical to know as scientists develop new FSDH  treatments and drugs. 

We hope you will be part of the “True Cost of FSHD” survey.