EUReMS reached an important milestone: the identification of existing data providers

The results of the study on the existing MS registries - conducted in the framework of the EUReMS project - were presented by Peter Flachenecker, Karoline Buckow and Maura Pugliatti for the EUReMS consortium during the ECTRIMS Congress, on Thursday 3rd October 2013.

See a summary of their findings in the attached "poster".

The European Register in Multiple Sclerosis (EUReMS) project has therefore identified the existing MS registries and gathered detailed knowledge of their content and structure. This was an essential process on the road to establishing a platform to exchange and compare data on multiple sclerosis in Europe, the main objective of EUReMS.

The 20 national MS registries that are currently in use in Europe were identified from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire dealing with aspects such as background and purposes of the registry, inclusion criteria for centers and patients and quality control mechanisms was developed by reaching consensus among the EUReMS Consortium. 13 of those 20 registries filled in the survey.

These registries differ widely in terms of objectives, structure, data collected and patients and centres included. Despite this heterogeneity, a considerable number of registries cover at least some of the four EUReMS missions - epidemiology, long-term therapy outcome, health care issues and quality of life.

Whereas physician-based outcome measures (EDSS) are used in all registries, data from the patient's perspective (in particular, health-related quality of life) were only collected in six registries, and only four of them use standardized quality of life instruments (mostly MSIS-29 and EQ5d).

The detailed information obtained in this study is a prerequisite to evaluate comparability of existing registry data. These results will serve as a basis for several studies conducted within the framework of EUReMS.