Research programs, registries, and trials

Registries, trial listings, and programs that support EDS research, including the DICE Global Registry, EDS ECHO, ClinicalTrials.gov, Orphanet, and GARD.

By Hraness · Drafted with AI assistance.

• 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.

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• EDS ECHO teaches clinicians and community members about EDS

  research programevidence: established

  EDS ECHO is The Ehlers-Danlos Society's education program for clinicians and community members, built on the Project ECHO model. It is meant to bring research and management knowledge to the clinicians patients see.

  all EDS types · Research programs, registries, and trials

• The ClinicalTrials.gov EDS portfolio

  research programevidence: established

  The US federal trial registry lists interventional and observational EDS studies, including the local anesthetic trial (NCT05603741).

  all EDS types · Research programs, registries, and trials

• Orphanet and GARD keep reference records for rare diseases, including EDS

  research programevidence: established

  Orphanet (ORPHA:75531) and the NIH's Genetic and Rare Diseases Information Center (GARD) keep reference records for rare diseases, including EDS nomenclature and prevalence estimates.

  all EDS types · Research programs, registries, and trials