Research programs, registries, and trials
The living research infrastructure — the Global Registry, ECHO, HEDGE, clinical trials, and the institutes carrying EDS science forward.
The Ehlers-Danlos Society's DICE Global Registry is the central patient-powered research registry — the infrastructure behind the misdiagnosis survey and the recruitment rail for studies like HEDGE. Indexed as first-party registry infrastructure.
The ECHO program is the society's clinician-education and community-of-practice rail — how research and management knowledge reaches the providers patients actually see. Indexed as research-infrastructure, not a data source.
The federal trial registry is the canonical index of active EDS interventional and observational studies — the anesthetic-resistance RCT among them. The index's monitor tracks this portfolio for new registrations.
Orphanet (ORPHA:75531) and NIH GARD carry the reference-level disease records that anchor subtype nomenclature and prevalence estimates for rare-disease infrastructure. Indexed as reference rails rather than primary evidence.