Development and pilot phase of a European MS register

Abstract

The MS-ID (Multiple Sclerosis Information Dividend) project was initiated by the European Multiple Sclerosis Platform (EMSP) in 2007 in order to identify and address major inequalities of MS treatment and care and thus eliminate disparities across the EU. One major approach to reach these goals in the longer term is the implementation of a European MS register for MS. The feasibility of an EU MS register was piloted among five countries (Germany, Iceland, Poland, Romania and Spain). Each country liaised with one documentation centre. Countries and test centres were both chosen in a way that a heterogeneous health care structure was provided. After reaching consensus about the data set, comprehension and acceptability of the two questionnaires-representing both the physician's and the patient's perspective-were tested with 20 MS patients in each country. In a 6-month data collection period, data from 547 patients were recorded. Most sections of the questionnaires were available for more than 90% of patients. The results obtained from the pilot phase of the European MS register indicate that it is feasible to collect standardized data across Europe. Thus, the European MS register may be a valuable instrument to compare treatment and care of MS across countries, estimate the cost of MS in Europe and monitor the implementation of and adherence to guidelines. It may help to reduce the disparities in MS care and treatment throughout Europe and eventually improve the quality of life of people with MS.

Future MS care: a consensus statement of the MS in the 21st Century Steering Group

“…In addition, we ask regulators and funders to consider the relevance of the placebo arm and the assimilation of more long-term data on the therapy options available. In this regard, we support the European Commission’s consideration for a patient registry [4]. …”

“…Current medications slow the accumulation of disability in MS and reduce the frequency of relapses by modulating or (selectively) suppressing the patient’s immune system [2]. Although scientific evidence exists to show that early access to effective treatment and care is cost-efficient to society and has a meaningful impact on the quality of life of patients [3], significant disparity still exists between and within countries in the standard of treatment offered to people with MS [4]. There also remains a lack of awareness and education of MS in general among healthcare professionals, patients, and the general public [5–8].…”

Midkine in Inflammation

“…In Europe around 500,000 people suffer from MS [74]. MS is a chronic autoimmune disease that is characterized by demyelination of axons of the central nervous system caused by autoreactive T-cells and demyelinating antibodies.…”

Emerging evidence-based physical rehabilitation for Multiple Sclerosis - Towards an inventory of current content across Europe

“…The use of each approach probably depends on social and health policy system in each country [28]. The role of policy systems in disparities within Europe is mentioned in a very recent study [29] that compared treatment and care of MS in chosen six countries with different geography, culture, and economical and politic systems. Prodiner et al 2010 [30] confirmed that policy factors influence participation in work or social life and recommended the development of participation outcome measurements.…”