title: [MS registry in Germany--design and first results of the pilot phase].
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.
authors.affiliation: Neurologische Universitätsklinik Würzburg. peter.flachenecker@quellenhof.de
authors.forename: P
authors.initials: P
authors.lastname: Flachenecker
authors.forename: U K
authors.initials: UK
authors.lastname: Zettl
authors.forename: U
authors.initials: U
authors.lastname: Götze
authors.forename: J
authors.initials: J
authors.lastname: Haas
authors.forename: S
authors.initials: S
authors.lastname: Schimrigk
authors.forename: W
authors.initials: W
authors.lastname: Elias
authors.forename: M
authors.initials: M
authors.lastname: Pette
authors.forename: M
authors.initials: M
authors.lastname: Eulitz
authors.forename: M
authors.initials: M
authors.lastname: Hennig
authors.forename: J
authors.initials: J
authors.lastname: Bertram
authors.forename: R
authors.initials: R
authors.lastname: Hollweck
authors.forename: A
authors.initials: A
authors.lastname: Neiss
authors.forename: M
authors.initials: M
authors.lastname: Daumer
authors.forename: D
authors.initials: D
authors.lastname: Pitschnau-Michel
authors.forename: P
authors.initials: P
authors.lastname: Rieckmann
mesh_terms: D000328:Adult; D017677:Age Distribution; D015340:Epidemiologic Research Design; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D015994:Incidence; D008297:Male; D009103:Multiple Sclerosis / Q000145:classification* / Q000175:diagnosis / Q000453:epidemiology*; D010865:Pilot Projects; D012042:Registries; D018570:Risk Assessment / Q000379:methods*; D012307:Risk Factors; D017678:Sex Distribution; D012959:Socioeconomic Factors