Italian Multiple Sclerosis and Related Disorders 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 3.600 new cases of multiple sclerosis for a total of 144.000 people living with the disease.
The "Italian Multiple Sclerosis and Related Disorders 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.
The Italian MS Society (AISM) estimates that there are approximately 2,000 people across Italy living with related disorders, such as Neuromyelitis Optica Spectrum Disorder (NMOSD) or MOG Antibody-Associated Disease (MOGAD).
This study is based on collaboration of many clinical centers 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 and Related Disorders Register" was launched in 2015, and it is promoted by FISM ETS-"Fondazione Italiana Sclerosi Multipla"- and UNIBA -"Università degli Studi Aldo Moro di Bari". It is mainly financed by FISM ETS, the foundation of the national charity in Italy on Multiple Sclerosis.
A Technical Operational and Coordinating Structure Technical and administrative infrastructure is coordinated by FISM ETS
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 person with a diagnosis of MS or related disorder enrolled was required to sign a written informed consent to enter the register.
Starting in October 2016, each participating center has access to the collected data, subject to the submission and approval by the Study’s Scientific Committee of a research project consistent with the objectives of the "Italian Registry of Multiple Sclerosis and Related Disorders."