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Registry of Ehlers-Danlos Syndrome

NCT04133272 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 3000

Last updated 2025-11-20

No results posted yet for this study

Summary

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.

Conditions

  • Ehlers-Danlos Syndrome

Sponsors & Collaborators

  • Luca Sangiorgi

    lead OTHER

Principal Investigators

  • Luca Sangiorgi, MD, PhD, MS · Istituto Ortopedico Rizzoli

Eligibility

Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2014-06-30
Primary Completion
2026-06-30
Completion
2033-01-31

Countries

  • Italy

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04133272 on ClinicalTrials.gov