Assess, compare and enhance the status of Persons with Multiple Sclerosis (MS) in Europe: a European Register for MS

Abstract

EUReMS will represent a tool to provide up to date, comparable and sustainable MS data through an effective and credible register, which will encourage extensive knowledge building of MS, more equitable policies and higher standards in MS treatment and services.

Changing requirements and resulting needs for IT-infrastructure for longitudinal research in the neurosciences

“…This includes a central data repository for phenotypic data, a project data warehouse providing interfaces for data analysis, a collaboration platform supporting document management and structured communication, an EEG/MRI file storage and review management, as well as electronic data collection tools for participant management, study documentation, or specimen tracking. Two other papers at least described the intention of the authors to set up an appropriate IT-infrastructure (López-Pousa et al, 2006;Pugliatti et al, 2012). In summary, the literature on IT-infrastructure in general as well as specific IT-challenges in neurosciences is very scarce in comparison to thousands of studies in the field.…”

“…In the area of neuroscience research several national and international projects (Dangl et al, 2010;Demiroglu et al, 2012;Helbing et al, 2010;Pugliatti et al, 2012;Stroet et al, 2010) have been supported over years and the main components of the latest application design are described in the following.…”

The Norwegian Multiple Sclerosis Registry and Biobank

“…The Norwegian MS Registry and Biobank will also participate in the important initiative for an European MS Registry (EUReMS) that aim for improved patient care in Europe, as reviewed by Pugliatti in this number of Acta Neurologica Scandinavica . By harmonization of data , the registry could also be available for future collaborative project with other Scandinavian MS‐registries such as the Swedish or the Danish registries .…”

A need for national registries and international collaborative research in multiple sclerosis

“…In contrast to the Norwegian registry, registration is carried out by a few neurologists, based on copies of patient records combined with data from the adjoining Danish MS Treatment Registery and the Danish National Patient Registery (11). The aim of EUReMS is to collect and aggregate large European datasets (13,14) to promote MS research and standards for equal healthcare for persons with MS across Europe. Such web-based software for realtime registration is probably needed to motivate physicians to provide data in a meaningful way both for the patients, physician and the registry.…”

“…The European MS Platform (EMSP http://www.emsp.org/), an umbrella organization of 38 national MS societies from 34 European countries, has taken the initiative for establishing a European MS Registry (EUReMS). The aim of EUReMS is to collect and aggregate large European datasets (13,14) to promote MS research and standards for equal healthcare for persons with MS across Europe.…”