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Hamostaseologie 2009; 29(S 01): S13-S15
DOI: 10.1055/s-0037-1617212
Original article
Schattauer GmbH

Austrian Haemophilia Registry

Up-date 2008Österreichisches Hämophilie RegisterUpdate 2008
S. Reitter
1   Clinical Division of Hematology and Hemostaseology, Department of Internal Medicine I Medical University of Vienna, Austria
,
R. Sturn
1   Clinical Division of Hematology and Hemostaseology, Department of Internal Medicine I Medical University of Vienna, Austria
,
W. Streif
2   Department of Paediatrics, Medical University of Innsbruck, Austria
,
T. Schabetsberger
3   UMIT – University for Health Sciences, Medical Informatics and Technology in Tyrol
,
F. Wozak
3   UMIT – University for Health Sciences, Medical Informatics and Technology in Tyrol
,
C. Male
4   Department of Paediatrics, Medical University of Vienna, Austria
,
W. Muntean
5   Department of Paediatrics, Medical University of Graz, Austria
,
I. Pabinger
1   Clinical Division of Hematology and Hemostaseology, Department of Internal Medicine I Medical University of Vienna, Austria
› Author Affiliations
Further Information

Publication History

Publication Date:
30 December 2017 (online)

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Summary

The treatment of haemophilia requires continuous development of knowledge related to various aspects of diagnosis and therapy. It is, therefore, essential to collect valid and representative data, which are comparable on an international level. The Austrian Haemophilia Registry was set up by the Scientific Advisory Panel of the Austrian Haemophilia Society and by the patient organisation. For the design, it was decided to divide the registry into three sections, two concerning quality control and a third concerning scientific questions, the latter requiring written informed consent. A web-based software is used to collect data. Transfer and storage of data are secured and the server is situated in a computer center with video and access control. Data entry was initiated early 2008. Currently, only preliminary data are available. Our further focus is on continued data entry, which will further enable us to provide information concerning the characteristics of the haemophilia patient population in Austria and the actual treatment modalities used.

Zusammenfassung

Die Behandlung der Hämophilie erfordert kontinuierliche Fortbildung und Forschung hinsichtlich Diagnosestellung und Therapie. Die Verfügbarkeit repräsentativer, international vergleichbarer Daten ist dafür eine wesentliche Voraussetzung. Daher wurde von der Österreichischen Hämophilie Gesellschaft (ÖHG) ein Österreichisches Hämophilie Register erstellt, welches aus drei Teilen besteht. Zwei Teile dienen der Qualitätskontrolle und ein dritter, so genannter Studienteil, welcher das schriftliche Einverständnis jedes Patienten erfordert, umfasst wissenschaftliche Daten. Die Dateneingabe erfolgt online mittels einer speziell hierfür entwickelten Eingabe-software. Der Datentransfer erfolgt über eine gesicherte Verbindung und die Daten werden auf einem Server, welcher in einem Computer-center mit Video- und Zugangskontrolle lokalisiert ist, gespeichert. Derzeit liegen erste präliminäre Daten zum Register vor. Unser weiteres Hauptaugenmerk liegt auf der fortlaufenden Datenerfassung, um umfassende Informationen bezüglich der Charakteristika der Hämophiliepatienten in Österreich und Daten zu den aktuellen Therapien bereitstellen zu können.

Keywords

Registry - haemophilia - Austria - quality control

Schlüsselwörter

Register - Hämophilie - Österreich - Qualitätskontrolle
 

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