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. 2008 Feb;105(7):113-9.
doi: 10.3238/arztebl.2008.0113. Epub 2008 Feb 15.

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

Peter Flachenecker  1 , Kristin Stuke, Wolfgang Elias, Matthias Freidel, Judith Haas, Dorothea Pitschnau-Michel, Sebastian Schimrigk, Uwe K Zettl, Peter Rieckmann
Affiliations

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

Peter Flachenecker et al. Dtsch Arztebl Int. 2008 Feb.

Abstract

Introduction: In 2001, a nationwide multiple sclerosis (MS) registry was initiated in Germany under the auspices of the German MS Society, (DMSG Bundesverband e.V.). The project aimed at collecting epidemiological data and information on health care provision for MS patients in Germany.

Methods: After a 2-year pilot phase, the original entry mask was modified, and new centers were recruited, resulting in the registration of a total of 5821 patients in 2005 and 2006. Following a 2 stage quality control process, standardized data sets for 5445 patients (93.5%) were able to be analyzed.

Results: Mean duration from onset of disease to diagnosis was 3.5 years. More than 70% of patients received immunomodulatory drugs, whereas symptomatic treatments were less commonly administered. The number of participating centers as of 31 December 2006 was 57 (29 neurological hospitals, 11 rehabilitation units, 13 specialized practitioners, and 4 regional MS centers).

Discussion: The MS registry provides valuable data on patterns of care for MS patients in Germany, and may help to improve service provision and overall quality of life for these patients.

Keywords: MS registry; ability to work; database mangagement system; drug therapy; epidemiology; multiple sclerosis.

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Figures

Figure 1
Figure 1
Documentation centers as of 15 March 2007. Red = neurological hospitals; light blue = rehabilitation units; dark blue = specialized practitioners; green = regional MS centers.
Figure 2
Figure 2
Growth of the MS registry. Increase in the number of documentation centers (above) and data sets (below) over time. The total number of centers increased from 5 in the pilot phase (2002 to 2003), to 15 in 2005, 57 in 2006, and 74 as of 15 March 2007. By the end of 2006, a total of 5445 cumulative data sets had passed both stages of quality control. Data sets from the pilot phase were not eligible for inclusion, because the structure of the data sets was modified prior to the extension phase.
Figure 3
Figure 3
Disease frequency in relation to degree of disability as measured by the Expanded Disability Status Scale, or EDSS (4) (n = 5343).
Figure 4
Figure 4
Ambulatory ability in relation to age Red = percentage of MS patients who had not reached EDSS 6.0 (i.e. still able to walk 100 meters without a cane, crutch, or brace); blue = percentage of MS patients who had not reached EDSS 4.0 (i.e. still able to walk more than 500 meters without a cane, crutch, or brace). The numbers above the x-axis indicate the number of patients in each decade of life (n = 5343).
Figure 5
Figure 5
Inability to work in relation to degree of physical disability. Percentage of MS patients in retirement according to Expanded Disability Status Scale (EDSS) score. Grey bars = old-age benefits; green bars = early retirement due to inability to work; red bars = early retirement due to impaired ability to work.
See this image and copyright information in PMC

Comment in

  • Article of 30 years ago.
    Firnhaber W. Firnhaber W. Dtsch Arztebl Int. 2008 Apr;105(17):318; author reply 318. doi: 10.3238/arztebl.2008.0318a. Epub 2008 Apr 25. Dtsch Arztebl Int. 2008. PMID: 19629242 Free PMC article. No abstract available.

References

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