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.
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.
Authors: Maria Trojano; Mar Tintore; Xavier Montalban; Jan Hillert; Tomas Kalincik; Pietro Iaffaldano; Tim Spelman; Maria Pia Sormani; Helmut Butzkueven Journal: Nat Rev Neurol Date: 2017-01-13 Impact factor: 42.937
Authors: Lotte Geys; Tina Parciak; Ashkan Pirmani; Robert McBurney; Hollie Schmidt; Tanja Malbaša; Tjalf Ziemssen; Arnfin Bergmann; Juan I Rojas; Edgardo Cristiano; Juan Antonio García-Merino; Óscar Fernández; Jens Kuhle; Claudio Gobbi; Amber Delmas; Steve Simpson-Yap; Nupur Nag; Bassem Yamout; Nina Steinemann; Pierrette Seeldrayers; Bénédicte Dubois; Ingrid van der Mei; Alexander Stahmann; Jelena Drulovic; Tatjana Pekmezovic; Waldemar Brola; Mar Tintore; Nynke Kalkers; Rumen Ivanov; Magd Zakaria; Maged Abdel Naseer; Wim Van Hecke; Nikolaos Grigoriadis; Marina Boziki; Adriana Carra; Mikolaj A Pawlak; Ruth Dobson; Kerstin Hellwig; Arlene Gallagher; Letizia Leocani; Gloria Dalla Costa; Nise Alessandra de Carvalho Sousa; Bart Van Wijmeersch; Liesbet M Peeters Journal: Int J MS Care Date: 2021-12-29
Authors: Lisa-Marie Ohle; David Ellenberger; Peter Flachenecker; Tim Friede; Judith Haas; Kerstin Hellwig; Tina Parciak; Clemens Warnke; Friedemann Paul; Uwe K Zettl; Alexander Stahmann Journal: Sci Rep Date: 2021-06-25 Impact factor: 4.379