Haemophilia registry of the medical committee of the Swiss Haemophilia Society. Update and annual survey 2009.
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.
Pediatric Hematology-Oncology Unit, DMCP, University Hospital CHUV, 1011 Lausanne, Switzerland. nikolas.von-der-weid@chuv.ch
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von der Weid
D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D000368:Aged; D002648:Child; D006306:Health Surveys; D006467:Hemophilia A / Q000453:epidemiology* / Q000401:mortality; D006801:Humans; D007231:Infant, Newborn; D012042:Registries; D012955:Societies, Medical; D013557:Switzerland / Q000453:epidemiology