Project Background

The EU faces deep inequalities in the way multiple sclerosis (MS) is managed from country to country. MS management refers to: access to disease-modifying drugs approved by the European Medicines Agency (EMA); access to symptomatic treatment and standard healthcare services; living and working conditions.

EMSP had already laid the foundations for a centralised system of MS data collection through its earlier projects:


• Multiple Sclerosis Information Dividend (MS-ID) - run between 2007 and 2009;
MS Barometer - started in 2008, reached its 4th edition in 2013;
Code of Good Practice in MS - first released in 2010 and then revised in 2014 under the title Defeating MS Together.

 

MS-ID was meant to test the feasibility of MS data collection across Europe. The project identified four key areas critical to the health and quality of life of people with this condition and organised a Survey to compare treatment and care of MS across countries and estimate the costs of MS in Europe. Five national MS societies, supported by neurological units and MS centres in these countries, participated in the MS-ID Survey.

For more detailed information on the Results of MS-ID, please visit www.ms-id.org.

For details on the MS Barometer and the Code of Good Practice, please visit www.emsp.org

Systems for continuous MS data capture have been already established in a number of European countries, however they differ in their objectives and methodologies. Therefore, exchange and comparison of data within the EU member states is a challenging task.

Through establishing a Network of MS Registries and providing the relevant methodology, EUReMS creates the Platform for sustainable exchange and comparison between existing MS data collections in Europe.