EDS patient experiences in clinic

Survey on EDS patient experiences in clinic

Understand the diagnostic course and experiences in clinic of patients with rare types of EDS

Lead Researcher

Colin Halverson is a researcher at Indiana University’s Center for Bioethics. He has a PhD in medical and linguistic anthropology from the University of Chicago, worked as an ethics researcher at Mayo Clinic, and completed a postdoctoral fellowship in medical ethics at Vanderbilt University.

His work focuses on improving care for patients with Ehlers-Danlos Syndrome and is currently funded in part by the National Institutes of Health.

Colin is looking to recruit adult participants who know their clinical sub-type of EDS and have a molecular diagnosis.

This study is open to worldwide participants including the UK and patients diagnosed with vEDS and cEDS are welcome. Participants who complete the survey will receive a $20 online Amazon gift certificate to their email address.

Participants will be asked to complete an online survey. It takes around 10 minutes to complete the survey.

Study Details

The aim of this study is to better understand the diagnostic course and experiences in clinic of patients with rare types of EDS in order to improve similar patients' experiences in the future.

You can also contact Dr. Colin Halverson, PhD: