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- W1982242910 abstract "Purpose: Supported by EVI-Genoret (EU LSHG-CT-512036)To build a patient registry that provides comprehensive, well standardized and high quality information on the phenotype and genotype of patients with hereditary and age related retinal diseases. To foster international collaboration by providing easy access to this resource of uniformly phenotyped patients for researchers worldwide.Methods: Within the EU funded project EVI-Genoret standards for comprehensive phenotyping of patients with ARMD and hereditary retinal dystrophies (HRD) have been developed. These standards are implemented as electronic Case Report Form (CRF) in the patient registry. SOPs for clinical procedures assure high level of data quality. A 3 level system of datasets ensures comprehensive data acquisition and protection of sensible data. Data accessibility tags are used in order to establish and share data between collaborators. The database is SQL based and uses Java-script as a platform independent user interface. Legal and ethical questions that arise in different countries are addressed by a professional project management.Results: The registry can be easily accessed by Internet after a registration process. The user interface enables simple access irrespective of the operating system, no special software must be installed. The electronic CRF guides through the examination. An intelligent system checks in real-time for plausibility of entered data, supports consequent entries and automatically hides non-relevant fields, thus facilitating time effective work.All entries are stored based on a 3 level system. Level1 as basic catalogue of entries is accessible to all users, only after one to one cooperation agreement mandatory level2 can be accessed.So far 4 European centres (Coimbra, London, Paris, Madrid, Tubingen) and one in the US contribute to the registry with more than 2000 entries for AMD and HRD in the first year since its implementation.Conclusions: We preset the first international patient registry for patients with HRD and ARMD based on widely accepted CRFs and clinical SOPs. This registry will serve as a valuable resource for clinical trials in both ARMD and HRD and for basic research in this field and is open for collaborators to join." @default.
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- W1982242910 date "2007-10-02" @default.
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- W1982242910 title "The EVI-genoret phenotype / genotype patient data base: a pan-European tool for retinal dystrophies and age related macular degeneration" @default.
- W1982242910 doi "https://doi.org/10.1111/j.1600-0420.2007.01063_3094.x" @default.
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