Italian Multiple Sclerosis Register
The registers of pathology are efficient tools to collect and analyze personal, clinical and health data related to a large cohort of patients with the same disease.
To date, in Italy every year there are around 2.000 new cases of multiple sclerosis for a total of 114.000 people living with the disease. The "Italian Multiple Sclerosis Register" is aimed to increase the knowledge about multiple sclerosis through data collected by hundreds of centers and to prioritize the research questions on relevant aspects.
This project is based on collaboration of many clinical centers focusing on multiple sclerosis and it covers the following issues:
- Public Health Care: regional and national rate of disease’ prevalence and incidence, social and economic information, quality and assessment of Italian health assistance;
- Research: epidemiological data and information to plan focusing research studies, information about rare disease status and pediatric forms;
- Treatments: prognostic factors or predictive models, pharmacovigilance studies to assess safety, tolerability and efficacy of immunosuppressive or immunomodulate treatments,compliance for each therapy.
The "Italian Multiple Sclerosis Register" started in 2015, and it is supported by FISM Onlus-"Fondazione Italiana Sclerosi Multipla"- and UNIBA -"Università degli Studi Aldo Moro di Bari, Dipartimento Scienze Mediche di Base, Neuroscienze ed Organi di Senso". It is mainly financed by FISM, the foundation of the national charity in Italy on Multiple Sclerosis.
Technical and administrative infrastructure is coordinated by FISM accordingly with a Technical Methodological Structure based at IRCCS Istituto Ricerche Farmacologiche Mario Negri-Coresearch (STO).
The Italian MS register was approved by the Ethics Committee of the University of Bari and the local Ethics Committee of all participant centers. Each people with a diagnosis of MS enrolled was required to sign a written informed consensus to enter the register.
Since October 2016, each participant center has access of the data collected, according with the submission of a research projects related to the aims of "Italian Multiple Sclerosis Register".