Take the SURVEY – “Pain Control Methods in Use by Patients with Ehlers-Danlos Syndrome”

A university study is seeking participants with an EDS diagnosis to answer an online survey questionnaire.  The topic is pain control methods and life satisfaction. (Click on the title above to view the study details, which is followed by a link to the questionnaire at the bottom of the page.)


reich-logo“Karen Arthur is recruiting participants to a study titled “Pain Control Methods in Use by Patients with Ehlers-Danlos Syndrome and Pain Control Effectiveness.” She is looking for participants with a diagnosis of Ehlers-Danlos Syndrome of any subtype to complete a survey about EDS diagnosis, pain, pain management, and life satisfaction. By doing this research, Karen hopes to determine patients’ preferences for pain management. Participation in this study is voluntary; participants are free to withdraw at any time or refuse to participate without penalty. The survey will take approximately 20 minutes.

The survey is available online at the website below. No personally identifiable information will be collected. The survey is completely anonymous. No serious harm is expected for study participants, although there is a risk of psychological discomfort when responding to questions regarding chronic pain, long-term health diagnoses, and disability resulting from EDS. There is also a risk of elevating the pain level by answering questions about pain. These risks are expected to be no higher than the discomfort experienced in daily life when thinking about or talking with friends, family, or a physician about the condition. If the discomfort becomes too great, participants should exit the survey and seek appropriate support.

This study is not intended to suggest treatment(s) to participants. Please do not attempt any new treatment without discussing the pros and cons with your medical care provider(s).

Questions about this study can be sent to Karen Arthur at arthurkb1@appstate.edu. Questions regarding the protection of human subjects may be addressed to the IRB Administrator, Research and Sponsored Programs, Appalachian State University, Boone, NC 28608 (828) 262-2130, irb@appstate.edu. The IRB approval number for this study is: 13-0314.

By continuing to the survey, I acknowledge that I am at least 18 years old, have read the above information, have a diagnosis from a medical provider of EDS of any subtype, and provide my consent to participate under the terms above.”

Click here to answer the Study Questionnaire

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