Patients with congenital bleeding disorders (CBD) in Italy are regularly followed by 52 Haemophilia Treatment Centres (HTCs) distributed throughout the country. The expertise gained from these HTCs is coordinated within the framework of the Italian Association of Haemophilia Centres (AICE, Associazione Italiana Centri Emofilia). This medical organisation promotes an uniform approach to the treatment of haemophilic syndromes, developing shared therapeutic strategies, conducting collaborative clinical research activities and handling the organisational aspects of the facilities providing care of CBD patients in Italy. AICE collaborates with the National Institute of Health (Istituto Superiore di Sanità, ISS) in the management and updating of the National Registry of Congenital Coagulopathies1. It also holds a database for the census and monitoring of patients with CBD, registries collecting data on specific aspects of treatment (e.g., AICE Registry of Immune Tolerance Induction [ITI] in severe haemophilia A patients with inhibitors; RENAWI, National Registry of von Willebrand disease) and databases of gene mutations in haemophilia A and B patients. Some HTCs members of AICE participate in the European Haemophilia Safety Surveillance (EUHASS)

Principles of treatment and update of recommendations for the management of haemophilia and congenital bleeding disorders in Italy

CESARO, SIMONE;
2014-01-01

Abstract

Patients with congenital bleeding disorders (CBD) in Italy are regularly followed by 52 Haemophilia Treatment Centres (HTCs) distributed throughout the country. The expertise gained from these HTCs is coordinated within the framework of the Italian Association of Haemophilia Centres (AICE, Associazione Italiana Centri Emofilia). This medical organisation promotes an uniform approach to the treatment of haemophilic syndromes, developing shared therapeutic strategies, conducting collaborative clinical research activities and handling the organisational aspects of the facilities providing care of CBD patients in Italy. AICE collaborates with the National Institute of Health (Istituto Superiore di Sanità, ISS) in the management and updating of the National Registry of Congenital Coagulopathies1. It also holds a database for the census and monitoring of patients with CBD, registries collecting data on specific aspects of treatment (e.g., AICE Registry of Immune Tolerance Induction [ITI] in severe haemophilia A patients with inhibitors; RENAWI, National Registry of von Willebrand disease) and databases of gene mutations in haemophilia A and B patients. Some HTCs members of AICE participate in the European Haemophilia Safety Surveillance (EUHASS)
2014
congenital bleeding disorders; haemophilia with inhibitors; haemophilia; prophylaxis; therapy
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11562/901803
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