“The patient and the decision makers would have complete information both on the natural history and above all on the size of the phenomenon, being a rare disease. We obviously have a small number of patients within the Regions, so it is important for the decision makers to know the impact that this pathology has on a healthcare level. Each Region would have feedback on its patients and then possibly monitor and decide on the appropriate treatments at an organizational level for patients suffering from congenital disease”. (Iss), on the advantages of the proper functioning of the Mec register, in a message addressed to FedEmo-Federation of Haemophilia 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 20th World Haemophilia Day which is celebrated around the world on 17 April.
Retracing the birth of the MEC register, Arcieri continues: “The MEC register was founded in 1988-90 with the task of monitoring HCV and HIV infections in the context of blood-transmissible pathologies, after which an agreement was reached in 2005. with the Italian Haemophilia Association and a pathology register begins to be established. Thus, the registry tends to have more information on its natural history, recovering information both from an epidemiological and therapeutic point of view and also from the adverse events related to the appearance of inhibitors, which is one of the main ones. In 2017, through a Prime Ministerial Decree from the Ministry of Health, the register was established and officially recognized within the Higher Institute of Health”.
Arcieri does not deny the presence of critical issues regarding the transmission, management and storage of the data themselves: “Unfortunately yes, but let's say to a limited extent, because as there is good collaboration between the scientific society and the Institute of Health, we have good information coverage some data. Obviously this coverage needs to be improved. It must be structured: the 2017 Prime Ministerial Decree determines the configuration within the Regions of centers responsible for data transmission, of reference centers. Since 2018, the institute has asked the Regions what these centers should be and how the data relating to the register should be sent”, he concludes.
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