MS monitoring in Europeans..Harmonization or Gaggle of Geese

Flachenecker P, Buckow K, Pugliatti M, Kes VB, Battaglia MA, Boyko A, Ellenberger D, Eskic D, Ford D, Friede T, Fuge J, Glaser A, Hillert J, Holloway E, Ioannidou E, Kappos L; for the EUReMS Consortium. Multiple sclerosis registries in Europe – results of a systematic survey.Mult Scler. 2014 Apr. [Epub ahead of print]

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 interviewed 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 epidemiology (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 prerequisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations.

So there were 20 registries collecting information, but 7 could not be bothered to provide information and were chased up or responded in a different way and underlies the issues of having common approach to things..people do things differently

Many registries had the core principles but each probably “knows best” and goes their own way to some extent. 

Based on a recent ECTRIMS subroup meeting it seems the chances of getting everyone to do exactly the same thing will be like herding cats. However, as long as common and core sets of information are collected in a joined up way then registries are very powerful tools. 

In the computerised age it is a missed opportunity not to have core sets of information at your fingertips. But there are always issues of who has access and ensuring confidentiality. It is amazing that it has not already happened.

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