“We want our data to be collected and managed in the appropriate way, so that we can carry out serious health planning and invest in this pathology. We address our appeal to those we have invited to this day: the Higher Institute of Health, the Ministry of Health and the CNEL”. These are the words of Cristina Cassone, president of the Federation of Haemophilia Associations (FedEmo), during 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 on 17 April.
“It is an important birthday for us: we are celebrating twenty years by blowing out this candle with great enthusiasm – highlights Cassone – because the topics we have dealt with over the years are different, but they are all summed up in today's theme. The slogan is 'Contaci', which has a double meaning for us: not only on a numerical level, but also on the level of importance of the pathology. We want to focus our attention on the importance of collecting our data within a pathology registry that has already existed since 2017 at. the ISS. This register is an MEC register and we would like the Regions and centers to make more efforts to ensure that this data flows into this register”. It is not just “a register that lists patients – he specifies – but it is also an epidemiological register, which therefore collects important data both for scientific studies and for health planning and organisation”.
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