First in Europe in the promotion of personalized medicine. The Italian Multiple Sclerosis Association and its Foundation, FISM, received today in Pamplona the ICPerMed Best Practice in Personalised Medicine Recognition 2022 with the BARCODING MS project. An award for Italian excellence in the research and treatment of multiple sclerosis, and for data sharing as a tool to give personalized answers to patients, to improve treatments and thus their quality of life. An acknowledgment that goes to the over thirty-year commitment of AISM and its foundation in Research and to the whole network of centers and researchers who actively participate in the collection and sharing of clinical, epidemiological, genetic and magnetic resonance data. And above all to patients who, through the sharing of their data, in a responsible, aware and increasingly active manner, participate in research to give an answer to their still unmet needs.
BARCODING MS is the project, launched during the last annual congress of FISM researchers, for the creation of an integrated database asset, which brings together, with the ability to dialogue, all the clinical, imaging, genomic and person-generated data on all new cases diagnosed with MS in Italy. The aim is to develop a sort of identification code for each patient, a multidimensional photograph of the disease, making the data talk to each other, to contribute to knowledge on the progression of the disease, on the treatments and on the causes of multiple sclerosis.
But BARCODING MS was born from a solid experience of good practices in the acquisition of disease data in different areas of expertise. AISM and FISM have in fact for years promoted and financed the development of registries and databases that study various aspects of the disease, both through the commitment of centers and researchers and through data generated by patients, with initiatives such as that of the Italian Multiple Sclerosis Registry and related pathologies, the Italian Network of NeuroImaging – INNI, the PROgnostic GEnetic factors in Multiple Sclerosis, the Sardinian genomic database, and again PROGEMUS and the Patient-Reported Outcome Measures for MS, PROMOPRO-MS. More recently, with the MuSC-19 platform, the activity of FISM researchers has concerned the collection of data on the safety of immunosuppressant drugs against SARS-CoV-2 infection.
The ambition today is to go further, with a data sharing project which, thanks to the ability of institutes and researchers to network, brings together robust and quality data. However, all of this would not have been possible without the push of people with MS, an active part of the research and the first to encourage the circulation of data, to get involved.
ICPerMed Best Practice in Personalised Medicine Recognition 2022 is an initiative of the International Consortium for Personalized Medicine (ICPerMed), an international consortium for the promotion of personalized medicine for the benefit of citizens and health systems funded by the European Union, and participated in Italy by the Ministry of Health (members) . The award was collected today in Pamplona by the president of FISM, Mario Alberto Battaglia, illustrating the project within the Workshop “Preparing the Future for Personalized Medicine (EP PerMed)”.