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This project has developed the information technology platform with a central data base and internet portal with remote entry access for the entire network and associated structures. Core data sets, compatible with international EB registries, will be developed, and the data in the data base will allow international comparisons. The project will also offer the patients an opportunity to use the remote entry platform to document their own EB data and to participate in prevention programs of the network. The project participates actively in the working groups of the German telematic platform for medical research networks (TMF) and represents there the needs of small research networks.
Prof. Dr. H.U. Prokosch / Dr. T. Ganslandt
Institut für Medizininformatik, Biometrie und Epidemiologie
Lehrstuhl für Medizinische Informatik
Krankenhausstraße 12
D-91054 Erlangen
Phone: +49-9131-85-26720
Fax: +49-9131-85-26754
Email:
ulli.prokosch@imi.med.uni-erlangen.de
Thomas.Ganslandt@uk-erlangen.de
