Epidemiology of motoneuron diseases in Swabia

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During the previous funding period we were able to successfully implement the first clinical epidemiological register for amyotrophic lateral sclerosis (ALS) in Germany. In order to allow international comparisons and future collaborations, the instruments were coordinated with those of the European ALS MND group (EURALS), beyond the established methodology was used to a register in China (Beijing: 10 million people covered) and Mongolia (Ulanbaatar:1.5 million persons covered) establish.The age-standardized incidence of ALS in Swabia is 2.5 (95% CI 2.3 to 2.7) per 100,000 people, and is consistent with estimates from other European registries. The completeness has been tested with the capture-recapture method and is estimated to be 81%. From 1.10.2010, ALS patients were recruited in a case-control study and frequency matched to control subjects in order to explore on possible risk factors. From most patients and control subjects bio material has been collected. The objectives of the first phase were realized with the establishment of effective structures and quality assured processes for implementing register-based studies and confirmed by first publications.Recent publications show a correlation between the frontotemporal dementia (FTD) and ALS. To account for this phenotype in future evaluations, FTD cases will additionally be recorded in the register and a modified method will be applied.We will conduct a comparative analysis of the ALS Registry Swabia with other registries of European EURALS Group and the cooperation partners in China and Mongolia. Once, expected end of 2013, as required by the power calculations case numbers are achieved statistical evaluation of the case-control study will be conducted with the involvement of biological material. In addition, we will continue to pursue the study of spatial patterns of the ALS disease risk.