SUMMARY OF RESEARCH

What is this study about?
To better understand the economic impact of Ehlers-Danlos Syndrome, researchers at Penn State College of Medicine are conducting a survey. The aggregate results will be published and made available to guide health services organizations and policy.

You should take this survey if:
You or someone in your family has Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD).
 You are 18 years or older.
 You have knowledge of your family's finances.

About the survey:
 It is anonymous.
 We ask about approximate expenses for 1 calendar year: 2022. It will be good to gather financial expenses related to EDS before you begin (such as medical bills, and itemized tax returns).
 The estimated time to complete this questionnaire is 30 minutes. It doesn't have to be finished in one sitting. You can save your responses and complete it later.
 If more than one person in your family has EDS, please complete a separate questionnaire for each family member.

This study was approved by the Penn State College of Medicine's Institutional Review Board.

Your help with this important study is greatly appreciated.

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