The Italian multiple sclerosis register

Italian Multiple Sclerosis Register Centers Group

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)155-165
Number of pages11
JournalNeurological Sciences
Volume40
Issue number1
DOIs
Publication statusPublished - Jan 2019

Fingerprint

Multiple Sclerosis
Registries
Databases
Quality of Health Care
Natural History
Administrative Personnel
Observational Studies
Decision Making
Industry
Epidemiology
Physicians
Safety
Research

Keywords

  • Adult
  • Cohort Studies
  • Data Collection/methods
  • Databases, Factual/trends
  • Female
  • Humans
  • Italy/epidemiology
  • Longitudinal Studies
  • Male
  • Multiple Sclerosis/diagnosis
  • Registries

Cite this

Italian Multiple Sclerosis Register Centers Group (2019). The Italian multiple sclerosis register. Neurological Sciences, 40(1), 155-165. https://doi.org/10.1007/s10072-018-3610-0

The Italian multiple sclerosis register. / Italian Multiple Sclerosis Register Centers Group.

In: Neurological Sciences, Vol. 40, No. 1, 01.2019, p. 155-165.

Research output: Contribution to journalArticle

Italian Multiple Sclerosis Register Centers Group 2019, 'The Italian multiple sclerosis register', Neurological Sciences, vol. 40, no. 1, pp. 155-165. https://doi.org/10.1007/s10072-018-3610-0
Italian Multiple Sclerosis Register Centers Group. The Italian multiple sclerosis register. Neurological Sciences. 2019 Jan;40(1):155-165. https://doi.org/10.1007/s10072-018-3610-0
Italian Multiple Sclerosis Register Centers Group. / The Italian multiple sclerosis register. In: Neurological Sciences. 2019 ; Vol. 40, No. 1. pp. 155-165.
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