Purpose: 

You are invited to participate in a research study being conducted at the Medical University of South Carolina (MUSC). Participation in this research is voluntary and will include only those who choose to take part. The purpose of this study is to better understand the clinical scope of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). 

 

Eligibility: 

To be eligible to participate in this research study, you must be at least 18 years old and have an official diagnosis of an Ehlers-Danlos syndrome (EDS) or a hypermobility spectrum disorder (HSD). All subtypes of EDS are invited to complete this survey. 

 

Survey: 

This survey should take you approximately 30 minutes to complete, and you will be asked questions about your demographics, medical history, and experience as a patient. You can return to the survey to pick up where you left off and/or edit previous responses. Although, you will not be able to edit your responses once the survey is submitted. It may be helpful to have your medical records nearby for your reference, but they aren't required to complete this survey. 

 

Risks: 

The risk in participating in this study is a potential loss of confidentiality. However, the information you provide in the survey will not be linked back to you. 

 

Benefits: 

While there are no direct benefits to the participants in this study, results may help researchers and medical professionals to better understand the complete picture of medical history and patient experience related to EDS and HSD in the future.  

 

Participation: 

Choosing to complete this survey implies your consent to participate. Participants can choose to end their participation at any time before submitting the survey form or can contact the Study Coordinator at any time to be removed from the study. If you are a student or employee of this institution, your participation or discontinuance will not constitute an element of your job performance or evaluation and will not become part of your record.  

 

Contact: 

If you have any questions about this research or this survey, please contact: 

Victoria Daylor (Study Coordinator, The Norris Lab) 

EDSHSDsurvey@musc.edu 

  

Thank you! 

 

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