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

Patients with congenital bleeding disorders (CBD) in Italy are regularly followed by 52 Haemophilia Treatment Centres (HTCs) distributed throughout the country1. 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)

Perceived challenges and attitudes to regimen and product selection from Italian haemophilia treaters: the 2013 AICE survey.

Despite great advances in haemophilia care in the last 20 years, a number of questions on haemophilia therapy remain unanswered. These debated issues primarily involve the choice of the product type (plasma-derived vs. recombinant) for patients with different characteristics: specifically, if they were infected by blood-borne virus infections, and if they bear high or low risk of inhibitor development. In addition, the most appropriate treatment regimen in non-inhibitor and inhibitor patients compel physicians operating at the haemophilia treatment centres (HTCs) to take important therapeutic decisions, which are often based on their personal clinical experience rather than on evidence-based recommendations from published literature data. To know the opinion on the most controversial aspects in haemophilia care of Italian expert physicians, who are responsible for common clinical practice and therapeutic decisions, we have conducted a survey among the Directors of HTCs affiliated to the Italian Association of Haemophilia Centres (AICE). A questionnaire, consisting of 19 questions covering the most important topics related to haemophilia treatment, was sent to the Directors of all 52 Italian HTCs. Forty Directors out of 52 (76.9%) responded, accounting for the large majority of HTCs affiliated to the AICE throughout Italy. The results of this survey provide for the first time a picture of the attitudes towards clotting factor concentrate use and product selection of clinicians working at Italian HTCs

Perceived challenges and attitudes to regimen and product selection from Italian haemophilia treaters: the 2013 AICE survey.

Despite great advances in haemophilia care in the last 20 years, a number of questions on haemophilia therapy remain unanswered. These debated issues primarily involve the choice of the product type (plasma-derived vs. recombinant) for patients with different characteristics: specifically, if they were infected by blood-borne virus infections, and if they bear high or low risk of inhibitor development. In addition, the most appropriate treatment regimen in non-inhibitor and inhibitor patients compel physicians operating at the haemophilia treatment centres (HTCs) to take important therapeutic decisions, which are often based on their personal clinical experience rather than on evidence-based recommendations from published literature data. To know the opinion on the most controversial aspects in haemophilia care of Italian expert physicians, who are responsible for common clinical practice and therapeutic decisions, we have conducted a survey among the Directors of HTCs affiliated to the Italian Association of Haemophilia Centres (AICE). A questionnaire, consisting of 19 questions covering the most important topics related to haemophilia treatment, was sent to the Directors of all 52 Italian HTCs. Forty Directors out of 52 (76.9%) responded, accounting for the large majority of HTCs affiliated to the AICE throughout Italy. The results of this survey provide for the first time a picture of the attitudes towards clotting factor concentrate use and product selection of clinicians working at Italian HTCs