Mario.A. Battaglia, President Italian Multiple Sclerosis Foundation – FISM; Professor of Hygiene and Public Health – University of Siena
Bringing together all the clinical, genomic and person-generated data on all new cases of multiple sclerosis in our country for the personalisation of treatments and care. Assigning each person with Multiple Sclerosis (MS) an identifying barcode. These are the purposes of the BARCODING MS project, which is born during the last annual congress of the Italian Multiple Sclerosis Foundation (FISM). Thanks to this project all the data are integrated to generate a sort of multidimensional identikit of each person with MS, a profile able to increase the knowledge on the causes, progression and treatments of this neurodegenerative pathology.
BARCODING MS already stems from a solid experience of good practice in data acquisition related to the person with MS in different areas of expertise. The Italian Multiple Sclerosis Society (AISM) together with its Foundation (FISM) have in fact promoted and funded the development of registers and databases studying different aspects of the disease, both through the efforts of MS centres and researchers and the data generated by the patients’ involvement. These initiatives are the Italian Multiple Sclerosis and Related Diseases Registry, the Italian Network of NeuroImaging - INNI, the PROgnostic GEnetic factors in Multiple Sclerosis (PROGEMUS), the Sardinian Genomic Data Base (ProgeNIA), and the Patient-Reported Outcome Measures for MS (PROMOPRO-MS).
More recently, with the MuSC-19 platform, the activity of FISM researchers has focused on collecting data related to the profile of affected patients and the safety of immunosuppressive drugs against SARS-CoV-2 infection. The ambition of today is to go further and ensure that, starting from 2024, people who receive a diagnosis of multiple sclerosis in Italy will be followed up with an integrated data collection system throughout the national territory. The data of people who received the diagnosis in previous years in a second phase will then be able to merge into the same data system.
