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Barcoding MS: An Italian Data Sharing Initiative Was Awarded as European Best Practice


The Italian MS Society and its Foundation received an important European Award at the beginning of 2023, thanks to its research initiative called Barcoding MS.

ICPerMed Best Practice in Personalised Medicine Recognition 2022, promoted by the International Consortium for Personalised Medicine (ICPerMed), awarded Barcoding MS as a European data-sharing best practice to improve personalized medicine, treatments, and quality of life of people with MS.

The goal of this project is to create an integrated network of clinical, epidemiological, imaging, genetic data, and also patient-reported outcomes, through the connection of different databases. These databases shall altogether contribute to creating a multidimensional picture of the person, increasing knowledge on the causes of multiple sclerosis, its progression as well as treatments.

The Italian MS Society supported several data-sharing initiatives in the last years, such as the Italian Multiple Sclerosis and Related Pathologies Registry, the Italian Network of NeuroImaging – INNI, the PROgnostic GEnetic factors in Multiple Sclerosis (PROGEMUS), and the Patient-Reported Outcome Measures for MS – PROMOPRO-MS.

More recently, the MuSC-19 platform has collected data on the safety of disease-modifying drugs during the COVID-19 pandemic.

The work on data sharing for research purposes started many years ago in Italy, counting on an excellent network of clinical centers and MS-focused research teams.

Above all, these projects were possible thanks to all people with MS who shared their data with great awareness, and who gave their consent to scientific research in order to answer the unmet needs of all people with MS.

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