To better understand and ultimately beat MS we need more and better data.
As a pioneer in this field, EUReMS has identified and pooled MS-related data from different registries – hospitals, MS societies and research centres around Europe –, and has created a cross-border partnership for its safe and effective storage, analysis, interpretation and dissemination.
EUReMS data enables analysis of:
- costs and resources,
- age and gender-specific trends,
- disease-modifying drugs and their impact.
The project is closely aligned with the European Commission’s efforts to fight health inequalities faced by European citizens. More and better data can drive policy improvements and provide incentives for new research.
- Association Of Ms Societies Of Croatia
- Department Of Neurosciences, University Of Sassari, Italy
- German Ms Society (DMSG)
- Karolinska Institutet, Medical University, Sweden
- Ms Centre Of Catalonia
- Multiple Sclerosis Society, Uk
- Neurological Rehabilitation Center Quellenhof, Germany
- Polish Ms Society
- Romanian Ms Society
- University Of Bergen, Norway
- University Medical Center Göttingen, Germany
The information gathered through EUReMS is being managed by and stored at the Medical Centre of the University Göttingen, Germany. Its dissemination is coordinated by EMSP through the Secretariat in Brussels, on the basis of access regulations developed within the EUReMS Scientific Board.
The aim for the post-2014 period is to use the newly created data infrastructure in collaboration with existing and emerging registries. This will eventually lead to a pan-european data pool to better assess the situation of people with MS.
EUReMS identified 20 MS registries across Europe; 12 of them started pooling their data in accordance with an agreed protocol to harmonise heterogeneous MS information.
The inclusion of the patients’ perspective adds significant value to the project.
The first data pooling process was completed in August 2014 and formed the basis for four test studies addressing EUReMS’ objectives:
- EPI-1-d Study: Estimating Prevalence and Incidence of MS in Europe from EUReMS data collection, coordinated by Prof. M Pugliatti;
- EPI-1-s Study: Comparison of the effect of the month of birth across Europe, coordinated by Prof. M Pugliatti and D Ellenberger;
- DMD-1 Study: Comparison of access and effectiveness of DMD treatment for people with MS across Europe, coordinated by Prof. J Hillert;
- PRO-1 Study: Assessment of people with MS’ quality of life, the burden of disease and influence of employment from the patient’s perspective across European countries, coordinated by Prof. Dr .Med. P Flachenecker.