Registry of Ehlers-Danlos Syndrome
Recruiting now
Conditions studied: Ehlers-Danlos Syndrome
In brief
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.
Key facts
- Study ID
- NCT04133272
- Run by
- Luca Sangiorgi
- People needed
- 3000
- Starts
- 2014-06-01
- Expected to finish
- 2033-01-01
- Last updated by the study team
- 2025-11-20
Who can join
Age: any. Sex: any. Healthy volunteers: accepted.
You may qualify if…
- All Ehlers-Danlos Syndrome patients, including prenatal and fetal diagnosis of Ehlers-Danlos Syndrome
You may not qualify if…
- Any condition unrelated to Ehlers-Danlos Syndrome
Where it is running
- Irccs Istituto Ortopedico Rizzoli — Bologna, Emilia-Romagna, Italy (enrolling)
Full record on ClinicalTrials.gov
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