True Cost of FSHD

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The FSHD Society is pleased to tell you about our new study called “The True Cost of FSHD.” This is one of the most important and urgent survey-based studies 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 combine what we learn from you, the patients, with additional payer-data gathered from insurance companies to identify the financial burden of living with FSHD. The collective results will be published to inform the government, insurance companies, and other decision makers, providing guidance on the true financial impact of living with FSHD. This will allow them to make more informed decisions on the difference that treatments can make to people’s lives, impact reimbursement decisions, and hopefully increase access to life-altering treatments that are to come. 

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

If you are taking the survey and have questions along the way, contact study@fshdsociety.org.

We want to say a huge THANK YOU to the hundreds of families and households who have completed the True Cost of FSHD research survey over the past two weeks. Your collective responses will help us better understand the costs to patients and their families living with FSHD.

The survey will remain open through this weekend to allow anyone who started but did not finish their responses to complete it. If you haven’t yet submitted your completed survey, please do so by October 24th. Here’s how:

  • Use the same device as when you first started the survey
  • Access the survey from the same link you originally did (i.e., from an email or social media post)
  • You should return to your survey with your answers saved!

If you have any questions or technical difficulties, please reach out to us at study@fshdsociety.org.

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 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. It may require you to take some additional time to gather information for your responses. 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)

 

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

Whether you have FSHD 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 FSHD  treatments and drugs. 

We hope you will be a part of this important effort!

If you know others with FSHD that might be interested in participating, please invite them to join in this important effort!

Participate in the True Cost of FSHD Survey