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

Status: Recruiting
Location: See location...
Study Type: Observational
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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: t
View:

• All Ehlers-Danlos Syndrome patients, including prenatal and fetal diagnosis of Ehlers-Danlos Syndrome

Locations
Other Locations
Italy
Irccs Istituto Ortopedico Rizzoli
RECRUITING
Bologna
Contact Information
Primary
Marina Mordenti, PhD
registri.malattierare@ior.it
+39 05 6366062
Backup
Marcella Lanza, PhD
registri.malattierare@ior.it
+39 05 6366169
Time Frame
Start Date: 2014-06
Estimated Completion Date: 2033-01
Participants
Target number of participants: 3000
Treatments
Ehlers-Danlos Syndrome patients
The group comprises all patients affected by Ehlers-Danlos Syndrome, including prenatal and fetal diagnosis of Ehlers-Danlos Syndrome
Related Therapeutic Areas
Sponsors
Leads: Luca Sangiorgi

This content was sourced from clinicaltrials.gov