title: [The national GTH haemophilia registry as database within the scope of the German human genome project].
abstract: The Committee of Haemophilia of the GTH has established a central registry for all German centers treating patients with haemophilia. The intention was to establish a suitable system for collecting and analyzing epidemiological data relevant to bleeding disorders. The registry provides the database within the scope of the German Human-Genome-Project. The set goal is the complete molecular characterization of the genetic mutations on chromosome X of haemophilia A patients in Germany and subsequent correlation with the phenotype. An electronic network is applied for communication. A Java-application was developed for online electronic data acquirement by the participating centers. Offline data entry and sending encrypted data carriers is possible, too. A high level of security is assured by personalized access. Data are anonymized and scrambled by secure encoding. The concept was confirmed by the official data security offices. A considerable improvement for the epidemiological sciences and a better basis on therapy for patients with bleeding disorders is expected. Furthermore the registry is available for other scientific projects.
authors.affiliation: Klinik für Anästhesiologie, Abteilung für Transfusionsmedizin und Hämostaseologie, Klinikum der Universität München-Innenstadt.
authors.forename: H
authors.initials: H
authors.lastname: Krebs
authors.forename: C
authors.initials: C
authors.lastname: Domsch
authors.forename: K
authors.initials: K
authors.lastname: Adelhard
authors.forename: H H
authors.initials: HH
authors.lastname: Brackmann
authors.forename: J
authors.initials: J
authors.lastname: Graw
authors.forename: J
authors.initials: J
authors.lastname: Oldenburg
authors.forename: R
authors.initials: R
authors.lastname: Schwaab
authors.forename: W
authors.initials: W
authors.lastname: Schramm
mesh_terms: D041321:Chromosomes, Human, X; D016208:Databases, Factual; D005858:Germany / Q000453:epidemiology; D006467:Hemophilia A / Q000453:epidemiology* / Q000235:genetics*; D016045:Human Genome Project; D006801:Humans; D009154:Mutation; D010641:Phenotype; D012042:Registries