[The national GTH haemophilia registry as database within the scope of the German human genome project].
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.
Krebs
H
H
Klinik für Anästhesiologie, Abteilung für Transfusionsmedizin und Hämostaseologie, Klinikum der Universität München-Innenstadt.
Domsch
C
C
Adelhard
K
K
Brackmann
H H
HH
Graw
J
J
Oldenburg
J
J
Schwaab
R
R
Schramm
W
W
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