The European Register for Multiple Sclerosis (find presentation flyer here), run between 2011 and 2014 by a consortium of academic institutions and NGOs, addresses the lack of data at EU and national level on treatment and care for people with multiple sclerosis (MS).
Upon its successful conclusion at the end of 2014, EUReMS is able to report the developing of a fully functional cross-border infrastructure for data collection, analysis, interpretation and dissemination of results in the MS field.
EUReMS has the potential to help all relevant stakeholders in Europe better understand the nature and impact of MS, and shape research and policy action towards improving the quality of life of those affected.
In 2011, EMSP identified only 6 national MS registries containing data from patients, in countries such as Sweden, Italy and Germany. The vast majority of European states did not posses suitable data infrastructures on multiple sclerosis, although this condition affects more than 700,000 people living on the continent and attracts total costs estimated at 15 billion euros per year.
Having laid the foundations for a centralised systematic data collection and analysis in MS through its earlier projects (read more), EMSP took a more comprehensive approach with EUReMS - as outlined in the Consensus Statement.
• Building a European Network of over ten national MS registers as data providers for EUReMS;
• Creating an online platform for collaboration and dissemination of knowledge on MS;
• Developing broadly recognised methodologies for data collection and analysis. (read more)
Quotes from EUReMS stakeholders
"Comparing data from different countries will be of great benefit to MS patients" (Karoline Buckow, IT Professional, Department of Information Technology, Medical University Centre in Gottingen, Germany)
"EUReMS will answer valuable scientific questions" (Peter Flachenecker, Neurologist, Medical Director of the Quellenhof Neurological Rehabilitation Centre in Bad Wildbad, Germany)
"Sharing MS data with partners from across Europe hasn't been done so far" (Susana Otero, Epidemiologist, Hospital Vall d'Hebron in Barcelona, Spain)