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Registry of Ehlers-Danlos Syndrome
Sponsor: Luca Sangiorgi
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.
Official title: Registry of Ehlers-Danlos Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Treatment, Quality of Life Data. Data Are Linked to Patients' Biological Samples, When Available
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
3000
Start Date
2014-06
Completion Date
2033-01
Last Updated
2025-11-20
Healthy Volunteers
Yes
Conditions
Locations (1)
Irccs Istituto Ortopedico Rizzoli
Bologna, Emilia-Romagna, Italy