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Multiple sclerosis ...
Multiple sclerosis registries in Europe - results of a systematic survey
- Article/chapterEnglish2014
Publisher, publication year, extent ...
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2014-04-28
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SAGE Publications,2014
Numbers
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LIBRIS-ID:oai:prod.swepub.kib.ki.se:129971765
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http://kipublications.ki.se/Default.aspx?queryparsed=id:129971765URI
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https://doi.org/10.1177/1352458514528760DOI
Supplementary language notes
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Language:English
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Summary in:English
Part of subdatabase
Classification
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Subject category:ref swepub-contenttype
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Subject category:art swepub-publicationtype
Notes
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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.
Added entries (persons, corporate bodies, meetings, titles ...)
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Buckow, K
(author)
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Pugliatti, M
(author)
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Kes, VB
(author)
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Battaglia, MA
(author)
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Boyko, A
(author)
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Confavreux, C
(author)
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Ellenberger, D
(author)
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Eskic, D
(author)
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Ford, D
(author)
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Friede, T
(author)
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Fuge, J
(author)
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Glaser, AKarolinska Institutet
(author)
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Hillert, JKarolinska Institutet
(author)
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Holloway, E
(author)
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Ioannidou, E
(author)
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Kappos, L
(author)
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Kasilingam, E
(author)
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Koch-Henriksen, N
(author)
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Kuhle, J
(author)
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Lepore, V
(author)
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Middleton, R
(author)
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Myhr, KM
(author)
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Orologas, A
(author)
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Otero, S
(author)
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Pitschnau-Michel, D
(author)
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Rienhoff, O
(author)
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Sastre-Garriga, J
(author)
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Schyns-Liharska, T
(author)
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Sutovic, D
(author)
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Thalheim, C
(author)
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Trojano, M
(author)
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Vlasov, YV
(author)
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Yaldizli, O
(author)
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Karolinska Institutet
(creator_code:org_t)
Related titles
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In:Multiple sclerosis (Houndmills, Basingstoke, England): SAGE Publications20:11, s. 1523-15321477-09701352-4585
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Flachenecker, P
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Buckow, K
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Pugliatti, M
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Kes, VB
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Battaglia, MA
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Boyko, A
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Confavreux, C
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Ellenberger, D
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Eskic, D
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Ford, D
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Friede, T
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Fuge, J
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Glaser, A
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Hillert, J
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Holloway, E
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Ioannidou, E
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Kappos, L
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Kasilingam, E
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Koch-Henriksen, ...
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Kuhle, J
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Lepore, V
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Middleton, R
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Myhr, KM
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Orologas, A
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Otero, S
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Pitschnau-Michel ...
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Rienhoff, O
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Sastre-Garriga, ...
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Schyns-Liharska, ...
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Sutovic, D
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Thalheim, C
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Trojano, M
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Vlasov, YV
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Yaldizli, O
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Multiple scleros ...
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Karolinska Institutet