title: Haemophilia Registry of the Medical Committee of the Swiss Haemophilia Society. Update and annual survey 2011/12.
abstract: The Haemophilia Registry of the Swiss Haemophilia Society is currently more than 12 years old. We present here the data as from October 31st, 2012. Registered are patients with haemophilia A and B, von Willebrand disease with VWF:R-Co < 10% and other rare factor deficiencies. For this latter group, inclusion in the Registry depends on the clinical relevance of the bleeding disorder, not on the factor level. Data come directly from the Swiss haemophilia reference and treatment centers and should be updated once a year. Currently 967 patients are registered, the majority (587) presenting with haemophilia A. Disease severity is graded according to ISTH criteria. Basic epidemiological findings are similar to those from larger registries in Europe, Canada or the USA. More that 60% of persons with haemophilia in Switzerland are treated on-demand, with the exception of young patients (<20 years) who present an 80 to 90% rate of prophylactic therapy. Nevertheless, global use of factor concentrates went continuously up over the last decade and reaches now 5.52 Units per capita, still a low value compared to other high-income European countries. A recent survey of the Registry shows that treaters' compliance with yearly data updates is insufficient; measures will be undertaken in 2013 to enhance data quality.
authors.affiliation: Nicolas von der Weid, MD, Head, Paed. Haematology-Oncology Department, University Children's Hospital UKBB, Spitalstr. 33, 4031 Basel, Switzerland, E-mail : Nicolas.vonderWeid@ukbb.ch.
authors.forename: N
authors.initials: N
authors.lastname: von der Weid
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001779:Blood Coagulation Factors / Q000627:therapeutic use*; D002648:Child; D002675:Child, Preschool; D005260:Female; D019538:Health Care Surveys; D006467:Hemophilia A / Q000401:mortality* / Q000628:therapy*; D006801:Humans; D015994:Incidence; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D012042:Registries / Q000706:statistics & numerical data*; D012307:Risk Factors; D015996:Survival Rate; D013557:Switzerland / Q000453:epidemiology; D055815:Young Adult; D014842:von Willebrand Diseases / Q000401:mortality* / Q000628:therapy*
chemical_list: D001779:Blood Coagulation Factors
keywords: Haemophilia; Switzerland; epidemiology; quality control; registry