Condition: Ehlers-Danlos Syndrome · Sponsor: Luca Sangiorgi
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.
This description comes directly from the study's public registry record.
Marina Mordenti, PhD · +39 05 6366062 · registri.malattierare@ior.it
Marcella Lanza, PhD · +39 05 6366169 · registri.malattierare@ior.it
Always discuss trial participation with your own doctor first.
| Irccs Istituto Ortopedico Rizzoli | Bologna, Emilia-Romagna, Italy | Recruiting |
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Source record: clinicaltrials.gov/study/NCT04133272