EDS patient experiences with clinicians

Survey on rare types of EDS patient experiences

Understanding the experiences of rare types of EDS patients with clinicians and during clinic visits

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.

The study is open to worldwide participants, including the UK, and patients diagnosed with vEDS and cEDS are welcome.

Participants will be asked to complete an online survey, which will last around 10 minutes.

Study Details

The aim of the study is to better understand the experiences of rare types of EDS patients with clinicians and during clinic visits. The research seeks to improve patient care for similar patients in the future.

You can also contact Dr. Colin Halverson, PhD: