Abstract
The past decade has seen extraordinary increase in worldwide availability of and access to several large multiple sclerosis (MS) databases and registries. MS registries represent powerful tools to provide meaningful information on the burden, natural history, and long-term safety and effectiveness of treatments. Moreover, patients, physicians, industry, and policy makers have an active interest in real-world observational studies based on register data, as they have the potential to answer the questions that are most relevant to daily treatment decision-making. In 2014, the Italian MS Foundation, in collaboration with the Italian MS clinical centers, promoted and funded the creation of the Italian MS Register, a project in continuity with the existing Italian MS Database Network set up from 2001. Main objective of the Italian MS Register is to create an organized multicenter structure to collect data of all MS patients for better defining the disease epidemiology, improving quality of care, and promoting research projects in high-priority areas. The aim of this article is to present the current framework and network of the Italian MS register, including the methodology used to improve the quality of data collection and to facilitate the exchange of data and the collaboration among national and international groups.
Highlights
Disease registries are well recognized as powerful tools to provide meaningful information on the burden, natural history, and long-term safety and effectiveness of treatments in the Breal-life^ population of patients with chronic diseases [1, 2]
In 2000, the Italian collection of multiple sclerosis (MS) clinical data started at different Italian MS centers in the framework of the Italian Multiple Sclerosis Database Network (MSDN) [5, 6]
The Italian MS register was approved by the Ethics Committee of the University of Bari (Italy) as coordinator center and the local ethics committee of all participant centers
Summary
Disease registries are well recognized as powerful tools to provide meaningful information on the burden, natural history, and long-term safety and effectiveness of treatments in the Breal-life^ population of patients with chronic diseases [1, 2]. The Italian Register is to completely represent the MS reality in Italy, so all the 236 Italian MS centers have been contacted by AISM/FISM in order to explore their willingness to participate to the Register project. – possible development of linkage procedures with regional information flows of health administrative data (hospital discharges, prescription drugs, ticket exemptions, register of patients, outpatient specialist) This MDS may be completed with an extension to optional information already available in the iMed© computerized medical folder [8, 9] (Table 1). 140 out of 236 contacted centers (60%) declared the willingness to participate (last update May 2018), and 103 completed their ethics committee process for approval and are ready to participate to the data collection. The 12 approved projects cover the following research areas: epidemiology; prognostic factors, and predictive models of disease course: adherence, efficacy, and safety of the treatments
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