What is REDgistry ?

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• Perform epidemiological studies on RED.
• Identify RED patients who still lack clinical and/or genetic diagnosis.
• Give patients access to novel treatments and facilitate the preparation of cohorts for clinical trials.
• Boost research in disease etiology, genetics and molecular disease pathogenesis biology.

The specific objectives of the REDgistry are achieved thanks to a structured work plan led by Hôpitaux Universitaires de Strasbourg (HUS), with the active collaboration of the ERN-EYE REDgistry consortium composed by the HCP members engaged in the project. This consortium is highly representative of the four main ERN-EYE working groups (WG) and the transversal work groups (TWG) members of the ERN-EYE. This consortium interacts with the RED community and, when necessary, the services of professional and experienced IT providers and legal advisors. Overall, this group of professionals conforms an experienced network capable of creating an interoperable and long-term sustainable RED registry connected to the ERDRI database in which the data of the existing patients at the ERN-EYE HCPs will be entered. The engagement of the affiliated HCPs and novel members is crucial for the success of the REDgistry project.