schema: eds-research/corpus/v1
category:
  id: research-programs
  label: Research programs, registries, and trials
  description: The living research infrastructure — the Global Registry, ECHO, HEDGE, clinical trials, and the institutes carrying EDS science forward.
  order: 90
records:
  - id: prog-dice-registry
    kind: program
    title: DICE — the Global Registry for EDS and HSD
    summary: 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.
    subtypes: [all-eds]
    status: established
    criteria_era: international-2017
    evidence:
      - stratum: registry
        tier: registry-report
        source_ids: [source-5a8d9db9800230d918cf]
      - stratum: registry
        tier: registry-analysis
        source_ids: [source-d4a910b62f451448889e]
        note: The registry is the sampling frame behind the published hEDS misdiagnosis analysis.
    reviewed_at: "2026-09-16"
    organizations: [The Ehlers-Danlos Society]
    tags: [registry]
  - id: prog-echo
    kind: program
    title: EDS ECHO — the professional-education research rail
    summary: 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.
    subtypes: [all-eds]
    status: established
    criteria_era: international-2017
    evidence:
      - stratum: registry
        tier: registry-report
        source_ids: [source-2542220d7aa64b3f7ca7]
    reviewed_at: "2026-09-16"
    organizations: [The Ehlers-Danlos Society]
    tags: [education, infrastructure]
  - id: prog-clinicaltrials-portfolio
    kind: program
    title: The ClinicalTrials.gov EDS portfolio
    summary: 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.
    subtypes: [all-eds]
    status: established
    criteria_era: era-independent
    evidence:
      - stratum: registry
        tier: trial-registration
        source_ids: [source-7caade9be5b82d40a0c7]
    reviewed_at: "2026-09-16"
    reassess_by: "2026-12-16"
    tags: [trials, registry]
  - id: prog-orpha-gard
    kind: program
    title: Orphanet and GARD — the rare-disease reference rails
    summary: 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.
    subtypes: [all-eds]
    status: established
    criteria_era: era-independent
    evidence:
      - stratum: registry
        tier: registry-report
        source_ids: [source-ed3f4f3ef7068a32fe53, source-c1d4d83f1e715158725f]
    reviewed_at: "2026-09-16"
    tags: [reference, rare-disease]