Barriers to diagnosis and care

Understanding the barriers to diagnosis and care for patients with molecularly defined/rare EDS, including vEDS.

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 will be asked to complete 1 or 2 interviews over Zoom or by telephone. Interviews will last around 45 minutes to one hour.

Study Details

The aim of this study is to better understand how rare type EDS patients successfully got diagnosed and how to improve patients' experiences with clinicians. This research seeks to improve the "diagnostic odyssey" for similar patients in the future.

To take part in this study contact Dr. Colin Halverson, PhD: