Below is a summary of IRB-approved research studies, registries and surveys for patients to participate in. If you know of any studies that you would like to see included below, please let me know!

Ongoing Research Studies and Surveys:

Economic Impacts of EDS and HSD Survey

To better understand the economic impact of Ehlers-Danlos Syndrome, researchers at Penn State College of Medicine are conducting a survey. The aggregate results will be published and made available to guide health services organizations and policy.


Coming Soon...

This page was last updated on July 11, 2023.