MS registry in Germany - results of the pilot phase

摘要

In summer 2001, a nationwide epidemiological MS register was initiated under the auspices of the German MS Society, National Association (DMSG). This project aimed at collecting epidemiological data in terms of number of patients with multiple sclerosis (MS), course of the disease and social situation in Germany. During the 2-year pilot phase, five MS centers with different capabilities participated leading to a representative selection of patients,, Due to December 2003, standardised data sets of 3,223 patients passed stepwise quality checks. The demographics of the data 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. Median EDSS was 3.0, and 70 % of patients had an EDSS<-4.0. The mean time from onset of the disease until diagnosis was 3.5 years and was essentially unchanged when comparing the 1980s, 1990s and from year 2000 on. Nearly one third of the patients were prematurely retired due to MS. Early retirement was associated with physi-cal disability, but a considerable proportion of patients were prematurely retired although they were still able to walk independently. Seventy-three percent were on immunomodulatory treatment, mostly with interferons and glatiramer acetate. However, 27% of patients received no immunotherapies at all, and this proportion was essentially unchanged even in those patients with clinically active disease. Since 2005, recruitment of additional centers has started leading to more than 70 centers participating, with more than 12,000 data sets being MS will be enabled and thus, health care of MS patients in Germanexpected until the end of 2007. With the results of this registry, measures directed towards the needs of people withy and the quality of life of these patients could be improved.