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Krebs, H.* ; Domsch, C.* ; Adelhard, K.* ; Brackman, H.H.* ; Graw, J. ; Oldenburg, J.* ; Schwaab, R.* ; Schramm, W.M.*

Das bundesweite GTH-hämophilie-register: Datenbasis im rahmen des Deutschen human-genom-projekts.

The national GTH haemophilia registry as database within the scope of the German human genome project

Hämostaseologie 23, 18-23 (2003)
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The Commitee 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 disotders. 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 datacenters is possible, too. A high level of security is assured by personalized access. Data are anonymized and scrambled by secute 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.
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Publikationstyp Artikel: Journalartikel
Dokumenttyp Wissenschaftlicher Artikel
Schlagwörter Data Security ; Human Genome Project ; Hyaemophilia Registry
ISSN (print) / ISBN 0720-9355
Zeitschrift Hämostaseologie
Quellenangaben Band: 23, Heft: 1, Seiten: 18-23 Artikelnummer: , Supplement: ,
Verlag Schattauer
Begutachtungsstatus Peer reviewed