“A pathology registry is a systematic and organized collection of all the data relating to a pathology. It is extremely important for a series of factors; first of all because it improves knowledge of the pathology itself: it can give us information on the frequency, incidence, the prevalence and natural history of the disease and also the prognostic factors”. ! 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 throughout the world on 17 April.
“You can also evaluate the effectiveness of the therapy itself through a series of 'out of range' tests, such as evaluating survival, quality of life and understanding if there are areas for improvement and acting on these deficient areas to improve them – continues Santoro – The pathology registry can also be an excellent source of data regarding clinical research. The epidemiological data can then be used for health planning and also to know where to allocate resources.”
Our intention is to have a pathology register that can be institutionalized. We are talking with the Higher Institute of Health precisely to try to create this register which has in fact already been designed and created by Aice, we would like it to be acquired The aim is to have a tool that can have improving characteristics in terms of data. And also to reach a greater number of centres, because the data we currently have are partial data possibility of giving a tool to both doctors and patients also for research purposes”, he concludes.
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