MS-Register in Deutschland – Ergebnisse 2005/2006

Flachenecker, Peter; Zettl, Uwe K.; Stuke, Kristin; Elias, W.; Freidel, M; Haas, J. Eugene; Pette, Mathilde; Pitschnau-Michel, Dorothea; Schimrigk, Sebastian; Rieckmann, Peter

doi:10.1055/s-2007-987983

Cited by 4 publications

(2 citation statements)

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“…This data set was based on the minimal data set of the German MS register, which has been run by the German MS society (DMSG Bundesverband e.V.) since 2001 [5][6][7]16], and was modified due to the suggestions of SAC members. In addition, the socioeconomic aspects and the EQ5d were derived from several well-designed cost-of-illness-studies [9,10].…”

Section: Methodsmentioning

confidence: 99%

Development and pilot phase of a European MS register

et al. 2010

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The MS-ID (Multiple Sclerosis Information Dividend) project was initiated by the European Multiple Sclerosis Platform (EMSP) in 2007 in order to identify and address major inequalities of MS treatment and care and thus eliminate disparities across the EU. One major approach to reach these goals in the longer term is the implementation of a European MS register for MS. The feasibility of an EU MS register was piloted among five countries (Germany, Iceland, Poland, Romania and Spain). Each country liaised with one documentation centre. Countries and test centres were both chosen in a way that a heterogeneous health care structure was provided. After reaching consensus about the data set, comprehension and acceptability of the two questionnaires-representing both the physician's and the patient's perspective-were tested with 20 MS patients in each country. In a 6-month data collection period, data from 547 patients were recorded. Most sections of the questionnaires were available for more than 90% of patients. The results obtained from the pilot phase of the European MS register indicate that it is feasible to collect standardized data across Europe. Thus, the European MS register may be a valuable instrument to compare treatment and care of MS across countries, estimate the cost of MS in Europe and monitor the implementation of and adherence to guidelines. It may help to reduce the disparities in MS care and treatment throughout Europe and eventually improve the quality of life of people with MS.

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Section: Methodsmentioning

confidence: 99%

Development and pilot phase of a European MS register

et al. 2010

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“…Within this period, 3,458 data sets were obtained from which 3,223 (93.2%) passed quality checks and remained for further analysis [3,4]. Based on the results of the pilot phase, the Minimal Data Set (MDS) was modified: unnecessary parameters were excluded, incomplete parameters were specified, and mistakable parameters were supplemented.…”

Section: Sirsmentioning

confidence: 99%

Symptomatology of MS: results from the German MS Registry

et al. 2009

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Since 2002, an MS Registry has been implemented by the German MS Society in more than 100 German MS centres. The objective is to provide information about disease characteristics, and to monitor the health care situation in a large population of patients. The aim of this report is to give detailed results on MS symptoms. By October 2008, data sets from 16,554 patients were recorded by 86 centres. A strikingly high number of persons suffered from fatigue and other "invisible" symptoms during early and late stages of the disease, underscoring the negative impact of these symptoms on quality of life in MS patients.

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MS-Dokumentation, MS-Register und MS-Management

Ziemssen¹,

Kern²

2015

Multiple Sklerose

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MS-Register in Deutschland – Ergebnisse 2005/2006

Cited by 4 publications

References 0 publications

Development and pilot phase of a European MS register

Development and pilot phase of a European MS register

Symptomatology of MS: results from the German MS Registry

MS-Dokumentation, MS-Register und MS-Management

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