Participate in Research on EDS
Do you have a form of Ehlers-Danlos Syndrome? Help support EDS research by participating in an online research study aimed at evaluating your personal experience of having EDS and the impact it has on your daily life.
My name is Stacey Le Fevre and I am the primary investigator for this research project. I was diagnosed with Ehlers-Danlos Syndrome, Hypermobile Type in 2003. I am currently working on my doctorate in clinical psychology at the University of Indianapolis and this research is being conducted in partial fulfillment of my doctoral requirements. Although research on the medical aspects of EDS has increased dramatically over the past decade, little attention has been given to how EDS affects the lives of those of us who deal with it on a daily basis. The aim of this research is to gather your collective experiences and better understand what it is like to live with the different types of EDS.
To participate you must be at least 18 years of age and have EDS. The questionnaire is 106 questions and will take approximately 30 minutes to complete. Your participation in this research study is voluntary and no identifying information will be asked. Click on the link below (or you my copy and paste it into your web-browser) and it will take you to the survey website. You will be asked to enter a password to enter the questionnaire (this is for test security). Please read through the information page in the beginning and check the box that you are giving your consent to participate. If at any time you have questions or concerns, please do not hesitate to contact me.
Thank you for your time and participation!
Stacey Le Fevre
University of Indianapolis