2014
DOI: 10.1177/1352458514528760
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Multiple sclerosis registries in Europe – results of a systematic survey

Abstract: 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.

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Cited by 61 publications
(54 citation statements)
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“…In our previous survey (14), 13 European MS registries were described. The current study was performed to update and expand the knowledge of the MS registry data and includes 19 MS registries, all based in Europe, with the exception of the international MSBase (15).…”
Section: Introductionmentioning
confidence: 99%
“…In our previous survey (14), 13 European MS registries were described. The current study was performed to update and expand the knowledge of the MS registry data and includes 19 MS registries, all based in Europe, with the exception of the international MSBase (15).…”
Section: Introductionmentioning
confidence: 99%
“…The former one requires a decision on either a central IT-infrastructure, providing a defined set of software tools for all participating centers (see also Demiroglu et al, 2012), or a decentralized IT-infrastructure, integrating data from the respective local software tools available at the participating centers. The latter one requires an appropriate handling of heterogeneous study contexts and data qualities as well as a mapping of data items (Flachenecker et al, 2014). Either way there is a need to control the various approaches and workflows (standard operating procedures, SOPs) of the centers or cohorts to collect digital and analogous data or to process information.…”
Section: It-requirements For Longitudinal and Large Cohort Studiesmentioning
confidence: 99%
“…Thus up to several thousand items will be documented per participant per visit in a dedicated study or phenotype database. Additionally, related metadata needs to be collected and managed to track heterogeneity if data collection is performed at different sites or if data is merged from various cohorts or trials (Flachenecker et al, 2014). Studies focusing on the degeneration of brains, i.e.…”
Section: Description Of the Latest Application Designmentioning
confidence: 99%
“…In a systematic review of MS registries and databases in Europe, a detailed search identified 17 national MS registries, adding to this list three other registries after contacting European MS societies (28). The registries differ with regard to objectives, structure, data, and the number and type of patients included.…”
Section: Medical and Socioeconomic Literature Related To Ms: Evidencementioning
confidence: 99%