The German Multiple Sclerosis Registry of the German MS Society View Homepage


Ontology type: schema:MedicalStudy     


Clinical Trial Info

YEARS

2003-

ABSTRACT

In Germany, a national MS registry was initiated in 2001 under the auspices of the German MS Society (DMSG Bundesverband e.V.) in order to collect epidemiological data on the number of patients with MS, course of the disease, and information on the healthcare and social situation of MS patients in Germany. Patients are entered into the registry if they (1) suffer from MS (according to the McDonald criteria) or clinically isolated syndromes suggestive of MS and (2) gave written informed consent for collecting pseudonymous data. Datasets are documented on-site in the study centres by participating physicians and pooled and analysed by the MS Forschungs- und Projektentwicklungs-gGmbH (MSFP-gGmbH), a non-profit company associated to the German MS Society. During a two-year period (2002/2003), a pilot phase has been taking place in five MS centres representing different levels of health care. Since 2005 the MS-Register collects data from a still expanding range of centres in Germany. More than 170 centres have contributed to the data collection so far (2016). As of October 2016 174 centres are part of the network collecting up to 27.000 data sets per year. The MS-Register has scientific advisory board that provides guidance and input for the government of data and the development of the register. Detailed Description The MS-Register has a focus on health system reporting related to the situation of People with MS in Germany. Specific additional research questions concerning e.g. HRQoL and usage of DMD are addressed via add-on modules. More... »

URL

http://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00011257

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