The DICE Global Registry collects patient-reported data on EDS and HSD
research programevidence: established
The Ehlers-Danlos Society's DICE EDS and HSD Global Registry collects health information that patients report about themselves. A misdiagnosis survey published in 2023 was circulated through it to registry members with hEDS who were also enrolled in the HEDGE genetics study; 505 completed it.
Not medical advice. This page summarizes research and does not recommend any course of care.
| EDS types | all EDS types |
|---|---|
| Diagnostic criteria | 2017 International Classification |
| Last checked | 2026-09-16 |
Evidence
registryregistry report
registryregistry analysis
The published hEDS misdiagnosis survey was circulated through the registry.