In January 2023 the Associazione Italiana Sclerosi Multipla (AISM the Italian MS Association) and its Foundation (FISM) received a European award for best practice in patient data sharing. The objective of the International Consortium for Personalised Medicine (ICPerMed) award is to honour, encourage, promote and disseminate outstanding examples of clinical research in personalised medicine. This work includes the use of clinical datasets and technology to impact data sharing among patients, health professionals, and researchers.
The award was given for the BARCODING MS initiative. For many years, AISM/FISM has supported a large network of centres and researchers who actively collect and share clinical, epidemiological, genetic and MRI data. An essential element of this initiative is the commitment of the people with MS themselves, who have decided to make their data available to develop research to address the challenges they face, and improve their quality of life.
The BARCODING MS initiative, launched in 2022, builds on this expertise and aims to develop an integrated database of clinical, genetic, imaging and patient-reported measures that combine to create a figurative ‘barcode’. Each individual barcode represents a newly diagnosed person with MS in Italy. This information will help researchers develop and, in future, recommend personalised treatments and therapies for individuals with MS.
On behalf of MSIF we offer our congratulations to AISM/FISM for their work in driving forwards excellence in data sharing.