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Registry of Ehlers-Danlos Syndrome

Study acronym: RED
StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗
Record status
This record was last updated November 20, 2025 (before its estimated June 2026 completion). Its status may not reflect the trial's current state.

Record History

See every version on ClinicalTrials.gov ↗

  1. Secondary endpoints: details revised at 1 of 1 entry
    • Study description expanded, about 62 words
    • Site contact updated
    v8
  2. 3 versions Re-verified since May 24, 2023, no change to tracked fieldsv5-v7
  3. Primary completion date: Jun 2022 to Jun 2026v4
  4. Trial status: Enrolling by Invitation to Recruiting
    • Site details revised
    v3
  5. Re-verified, no change to tracked fieldsv2
  6. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
RED is a retrospective and prospective registry, finalized for care and research purposes. It is articulated in main sections - strongly related and mutually dependent on each other - corresponding to different data domains: personal information, clinical data, genetic data, genealogical data, surgeries, etc. This approach has been developed to corroborate and integrate data from different sources and evaluating several aspects of diseases and to correlate genetic background and phenotypic outcomes, in order to better investigate disease pathophysiology. Due to legal requirements, institutional directives and organizational issues, we are unable to include individuals residing outside Italy in the registry at this time. We are currently engaged in the preparation of a recruitment process for individuals residing outside Italy.
Trial Details
NCT Number NCT04133272
Lead Sponsor Luca Sangiorgi
Conditions
(from sponsor)		 Ehlers-Danlos Syndrome
Related terms Ehlers-Danlos Syndrome
Enrollment 3,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov