(Adnkronos) – “The register was created in 1988-1990 with the task of monitoring HCV and HIV infections in the context of blood-transmissible diseases. In 2005 an agreement was created with the Italian Haemophilia Association and a register dedicated to haemophilia began to be set up, which tends to have more information on its natural history, recovering information both from an epidemiological, therapeutic and of adverse events linked to the appearance of inhibitors, which is one of the main complications in this pathology”. Thus Romano Arcieri, Istituto Superiore di Sanità – ISS, in a message addressed to FedEmo-Federation of Hemophiliac Associations as part of the conference “I count! Mec: the pathology register and health data, fundamental knowledge and planning tools”, promoted on the occasion of the XX World Haemophilia Day which is celebrated throughout the world on 17 April.
#Rare #diseases #Arcieri #Iss #Mec #registry #essential #meet #haemophilia #patients
