Multiple sclerosis in Germany 2018 - update on baseline data from the German MS Registry
ECTRIMS Online Library. Flachenecker P. Oct 10, 2018; 231798; 56
Prof. Peter Flachenecker
Prof. Peter Flachenecker
Contributions Biography

Abstract: 56

Type: Scientific Session

Abstract Category: Therapy - Others

Background: In 2001, the German MS society (DMSG) initiated a registry aimed at collecting data from people with MS (PwMS). With more than 49,000 PwMS, the German MS Registry is now one of the largest databases worldwide.
Objective: To provide an update on baseline data, health care situation and employment status of PwMS in Germany.
Methods: As of February 2018, 168 MS centers from different health care sectors (university hospitals, neurological clinics, rehabilitation centers and neurological practices) participated. In 2014, the documentation platform was changed towards a web-based electronic data capture (EDC) system allowing for comprehensive data collection and integration of different documentation systems. Quality measures ensure that the data are representative. To give an up-to-date picture of the situation in Germany the current analysis focused on patients with an update in the last 4 years.
Results: Data from 18,030 PwMS were available for analysis. Mean age (± SD) was 46.3 ± 12.2 years, 72 % were women, mean duration of MS was 10.6 ± 8.7 years, and median EDSS was 3.0. The disease course was relapsing-remitting in 77.4 %, secondary progressive in 16.8 %, and primary progressive in 5.8 %. The majority of PwMS (75.2 %) was treated with disease-modifying drugs (DMD), mostly with interferons, followed by fingolimod, glatirameracetate, dimethylfumarate, natalizumab and teriflunomide. Symptomatic treatment was administered from 28.3 % (cognitive deficits) to 86.0 % (spasticity) of PwMS suffering from these symptoms. Fully employed were only 37.5 % of PwMS, and 22.5 % were prematurely retired. Work ability decreased with increasing age and disability.
Conclusion: The current analysis suggests a more favourable outcome than our previous analysis more than 10 years ago which is in line with studies from other countries. Whereas most PwMS received DMDs, symptoms of MS seem to be undertreated. The low rate of fully employed PwMS underlines the need for more effective strategies that help maintain their functional level and social participation.

  • Peter Flachenecker has received speaker's fees and honoraria for advisory boards from Almirall, Bayer, Biogen, Genzyme, Merck-Serono, Novartis, Roche and Teva. He has participated in pharmaceutical company sponsored trials by Almirall, Biogen Idec and Novartis. None resulted in a conflict of interest.
  • Tim Friede has received personal fees for consultancies (including data monitoring committees) in the past three years from Bayer, Boehringer Ingelheim, DaiichiSankyo, Feldmann Patent Attorneys, Galapagos, Grünenthal, Janssen, Mediconomics, Novartis, Penumbra, Pharmalog, Roche, SGS, UCB; all outside the submitted work.
  • Judith Haas has received compensation from Almirall, Allergan, Biogen, Bayer, HOFFMANN La Roche, Merck, Novartis, Octapharma and Teva.
  • Christoph Kleinschnitz has received personal compensations for giving lectures and attending advisory boards from Biogen, Merck Serono, Bayer, Teva, Novartis, Medday, Mylan, Genzyme, Almirall, and Roche.
  • Dieter Pöhlau received institutional research grants and personal honoraria as speaker from Almirall, Biogen Idec, Bayer, Genzyme, Merck Serono, Novartis, Sanofi and TEVA.
  • Uwe K. Zettl received institutional research grants and personal honoraria as speaker from Almirall, Biogen Idec, Bayer, Merck Serono, Novartis, Roche, Sanofi and TEVA.
  • David Ellenberger, Otto Rienhoff, Alexander Stahmann and Kerstin Eichstädt have nothing to disclose.
GMSR is a project of the German MS Society. It is supported by the German MS Society's Trust and the MS Society itself.

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