Haemophilia registry of the medical committee of the Swiss Haemophilia Society. Update and annual survey 2009.

Détails

ID Serval
serval:BIB_DCD68ABEAAC3
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Institution
Titre
Haemophilia registry of the medical committee of the Swiss Haemophilia Society. Update and annual survey 2009.
Périodique
Hämostaseologie
Auteur(s)
Von Der Weid Nicolas
ISSN
0720-9355[print], 0720-9355[linking]
Statut éditorial
Publié
Date de publication
2010
Volume
30
Numéro
Suppl. 1
Pages
S15-S19
Langue
anglais
Notes
Publication types: Journal Article Publication Status: ppublish
Résumé
The Swiss Haemophilia Registry of the Medical Committee of the Swiss Haemophilia Society started in 1996 but was set as an internet-based, double password-protected facility in the year 2000. With the inclusion of patients' data from two new centres in 2009, we assume a coverage rate of about 90% of all patients with inherited bleeding disorders in our country. Data concerning the phenotype and genotype of the disorder, its severity, its therapy, the prevalence of inhibitors are readily available to the registered users, allowing quality control of haemophilia therapy at a national level, but also rapid care of the patient visiting the emergency room of another treatment centre. Basing on the available data, about two thirds of the WFH global survey can be answered; the mortality statistics shows that bleeding remains a cause of death in haemophiliacs, also in the 21th century. The Registry allows for comparisons with international datasets, especially with respect to treatment (prophylaxis vs. on-demand therapy), factor consumption and costs.
Pubmed
Web of science
Création de la notice
22/12/2010 14:43
Dernière modification de la notice
20/08/2019 16:01
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