Literature DB >> 15806419

[MS registry in Germany--design and first results of the pilot phase].

P Flachenecker1, U K Zettl, U Götze, J Haas, S Schimrigk, W Elias, M Pette, M Eulitz, M Hennig, J Bertram, R Hollweck, A Neiss, M Daumer, D Pitschnau-Michel, P Rieckmann.   

Abstract

In the summer of 2001, a nationwide epidemiological multiple sclerosis (MS) register was initiated under the auspices of the German MS Society (DMSG). This project aimed at collecting epidemiological data on the number of patients with MS, course of the disease, and their social situation in Germany. During the 2-year pilot phase, five MS centers with various regional differences and treatment methods participated, leading to a representative selection of patients. In December 2003, standardised data sets of 3,458 MS patients were available for evaluation. After examining the quality of the data, 3,223 sets remained for further analysis. The demographics were similar to those obtained from other epidemiological studies: 72% of the patients were female, mean age was 42.9+/-11.2 years, mean disease duration 12.6+/-8.7 years, and 64% suffered from the relapsing-remitting form of the disease. The median EDSS was 3.0, and 69% of patients had an EDSS </=4.0. The great effect of this disorder was underscored by the fact that one third of the patients had prematurely retired due to MS. After successful completion of the pilot phase, the MS register will provide reliable data and thus serve as an important tool to improve the overall situation of MS patients in Germany.

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Mesh:

Year:  2005        PMID: 15806419     DOI: 10.1007/s00115-005-1907-8

Source DB:  PubMed          Journal:  Nervenarzt        ISSN: 0028-2804            Impact factor:   1.214


  12 in total

1.  MUSIS 2.0 - Multiple Sclerosis Information System: An easy-to-use-database to improve the care of patients with multiple sclerosis.

Authors:  M Schröder
Journal:  Mult Scler       Date:  1999-08       Impact factor: 6.312

2.  [Projection of the number of multiple sclerosis patients in Germany].

Authors:  T Hein; W Hopfenmüller
Journal:  Nervenarzt       Date:  2000-04       Impact factor: 1.214

Review 3.  Multiple sclerosis.

Authors:  Alastair Compston; Alasdair Coles
Journal:  Lancet       Date:  2002-04-06       Impact factor: 79.321

4.  Early clinical predictors and progression of irreversible disability in multiple sclerosis: an amnesic process.

Authors:  Christian Confavreux; Sandra Vukusic; Patrice Adeleine
Journal:  Brain       Date:  2003-04       Impact factor: 13.501

Review 5.  The natural history of multiple sclerosis.

Authors:  B G Weinshenker; G C Ebers
Journal:  Can J Neurol Sci       Date:  1987-08       Impact factor: 2.104

6.  [The Multiple Sclerosis Documentation System MSDS. Discussion of a documentation standard for multiple sclerosis].

Authors:  M Pette; M Eulitz
Journal:  Nervenarzt       Date:  2002-02       Impact factor: 1.214

7.  Incidence and prevalence of multiple sclerosis in Olmsted County, Minnesota, 1985-2000.

Authors:  W T Mayr; S J Pittock; R L McClelland; N W Jorgensen; J H Noseworthy; M Rodriguez
Journal:  Neurology       Date:  2003-11-25       Impact factor: 9.910

8.  Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS).

Authors:  J F Kurtzke
Journal:  Neurology       Date:  1983-11       Impact factor: 9.910

9.  Change in MS-related disability in a population-based cohort: a 10-year follow-up study.

Authors:  S J Pittock; W T Mayr; R L McClelland; N W Jorgensen; S D Weigand; J H Noseworthy; B G Weinshenker; M Rodriguez
Journal:  Neurology       Date:  2004-01-13       Impact factor: 9.910

Review 10.  Disability profile of MS did not change over 10 years in a population-based prevalence cohort.

Authors:  S J Pittock; W T Mayr; R L McClelland; N W Jorgensen; S D Weigand; J H Noseworthy; M Rodriguez
Journal:  Neurology       Date:  2004-02-24       Impact factor: 9.910

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  18 in total

1.  Headache in the course of multiple sclerosis: a prospective study.

Authors:  Marcel Gebhardt; Peter Kropp; Frank Hoffmann; Uwe K Zettl
Journal:  J Neural Transm (Vienna)       Date:  2018-11-30       Impact factor: 3.575

2.  Recombinant Human Erythropoietin: Novel Strategies for Neuroprotective/Neuro-regenerative Treatment of Multiple Sclerosis.

Authors:  Claudia Bartels; Kira Späte; Henning Krampe; Hannelore Ehrenreich
Journal:  Ther Adv Neurol Disord       Date:  2008-11       Impact factor: 6.570

Review 3.  Development and pilot phase of a European MS register.

Authors:  Peter Flachenecker; Laura Khil; Sverrir Bergmann; Mariusz Kowalewski; Ion Pascu; Francisco Pérez-Miralles; Jaume Sastre-Garriga; Thomas Zwingers
Journal:  J Neurol       Date:  2010-05-05       Impact factor: 4.849

Review 4.  [Multiple sclerosis management system 3D. Moving from documentation towards management of patients].

Authors:  T Schultheiss; R Kempcke; F Kratzsch; M Eulitz; M Pette; H Reichmann; T Ziemssen
Journal:  Nervenarzt       Date:  2012-04       Impact factor: 1.214

Review 5.  Epidemiology of neuroimmunological diseases.

Authors:  Peter Flachenecker
Journal:  J Neurol       Date:  2006-09       Impact factor: 4.849

6.  [Escalating immunomodulatory therapy of multiple sclerosis. Update (September 2006)].

Authors:  Peter Rieckmann
Journal:  Nervenarzt       Date:  2006-12       Impact factor: 1.214

7.  [Pharmaceutical prescription for multiple sclerosis : evaluation of pharmaceutical consumption at private health insurance].

Authors:  F Wild
Journal:  Nervenarzt       Date:  2013-02       Impact factor: 1.214

8.  Symptomatology of MS: results from the German MS Registry.

Authors:  Kristin Stuke; Peter Flachenecker; Uwe K Zettl; Wolfgang G Elias; Matthias Freidel; Judith Haas; Dorothea Pitschnau-Michel; Sebastian Schimrigk; Peter Rieckmann
Journal:  J Neurol       Date:  2009-07-23       Impact factor: 4.849

9.  Multiple sclerosis registry in Germany: results of the extension phase 2005/2006.

Authors:  Peter Flachenecker; Kristin Stuke; Wolfgang Elias; Matthias Freidel; Judith Haas; Dorothea Pitschnau-Michel; Sebastian Schimrigk; Uwe K Zettl; Peter Rieckmann
Journal:  Dtsch Arztebl Int       Date:  2008-02-15       Impact factor: 5.594

10.  Chronical illness and maternity: life conditions, quality of life and coping in women with multiple sclerosis.

Authors:  Sabine Twork; Markus Wirtz; Sabine Schipper; Jörg Klewer; Antje Bergmann; Joachim Kugler
Journal:  Qual Life Res       Date:  2007-10-05       Impact factor: 4.147

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