Article on existing European MS registries published in MSJ

An article produced by specialists and stakeholders involved with the EUReMS project on the results of the systematic survey regarding existing MS registries in Europe was recently published in the Multiple Sclerosis Journal (MSJ). 

The information contained in the article was previously summarised in a "poster" produced by Peter Flachenecker, Karoline Buckow and Maura Pugliatti for the EUReMS Consortium. 

Find a list of EUReMS deliverables here

The abstract of the article, as shown in the related link on MSJ (access possible only with a subscription), mentions the background, methods, results and conclusions of the systematic survey: 

Background: Identification of MS registries and databases that are currently in use in Europe as well as a detailed knowledge of their content and structure is important in order to facilitate comprehensive analysis and comparison of data.

Methods: National MS registries or databases were identified by literature search, from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire was developed and sent to the registries’ leaders, followed by telephone interviews with them.

Results: Twenty registries were identified, with 13 completing the questionnaire and seven being inter¬viewed by telephone. These registries differed widely for objectives, structure, collected data, and for patients and centres included. Despite this heterogeneity, common objectives of the registries were epi¬demiology (n=10), long-term therapy outcome (n=8), healthcare research (n=9) and support/basis for clinical trials (n=8). While physician-based outcome measures (EDSS) are used in all registries, data from patients’ perspectives were only collected in six registries.

Conclusions: The detailed information on a large number of national MS registries in Europe is a prereq¬uisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations.