Q&A


What is the Purpose of EUReMS ?

EUReMS aims to establish a system for collection of high-quality and  comparable MS data in Europe.

Are there other systems for MS data collection in Europe?

MS registries and databases have been set up at a national or regional level  in  a number of  European countries (eg: Denmark, Sweden, France, Germany, Norway, Italy or Spain)  for various purposes.

Why do we need  a system for MS data at a European level?

There are several potential benefits of gathering comparable MS data from across Europe. Just to name two: 1) enable or empower studies which require a high number of participants; 2) compare health care practices, socio-economic status and patients' results between different  countries.  

Will EUReMS replace the existing national MS  databases and registries?

No, EUReMS aims to fill the existing gaps in the MS data at a European level .

What are the issues at a European level that EUReMS will aim to address:

EUReMS  will focus on the follwoing four areas:

(1) MS epidemiological and clinical surveillance and the assessment of the ‘MS burden’;

(2) the assessment of long-term efficacy, safety and cost-effectiveness of MS diseases-modifying and symptomatic treatments;

(3) the assessment of provision and quality of health care services;

(4) the assessment of quality of life, the burden of symptoms and socio-economic aspects from the patients' perspective.

Who can participate in EUReMS studies?

Regional, national or international MS registries and also public or healthcare-related databases which can provide MS data.

What are the  EUReMS studies ?

Currently, there are  four running studies under the project EUReMS:

(1) EPI-1-d Study: Estimating Prevalence and Incidence of MS in Europe from EUReMS data collection Coordinator: Prof. Maura Pugliatti

(2) EPI-1-s Study: Comparison of the effect of the month of birth (MoB) across Europe. Coordinators: Prof. Maura Pugliatti and Mr. David Ellenberger

(3) DMD-1 Study: Comparison of access and effectiveness of DMD treatment for PwMS across Europe. Coordinator: Prof. Jan Hillert, KI

(4) PRO-1 Study: Assessment of PwMS’ quality of life, the burden of disease and influence of employment from the patient’s perspective across European countries. Coordinator: Prof. Dr .Med. Peter Flachenecker

Who will have access to the EUReMS data?

Data provided to EUReMS will be managed by and stored at the University Medical Center Göttingen. The EUReMS Board decides the rules for access and usage for each particular study.

How will the data be protected?

All data providers retain full ownership of contributed data, including the right to withdraw data at will. EUReMS holds ownership of compiled high level data. Should data be withdrawn after compilation and analysis, EUReMS retains right of results as well as a copy of data used to obtain the results to be used for support of the results only, not for new analysis.