Multiple Sclerosis Registry in Germany

M ultiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system (CNS) and is the most common disease to cause chronic disability in young adults. It has been estimated that some 120 000 to 140 000 patients are affected by MS in Germany, although the exact number is unknown. The distribution of the disease according to its different subtypes or severity is also unclear (1). Despite the high economic burden of MS on society, with total annual costs of 40 000 euros per patient (2), there are still limited data on patterns of care for patients with this disease. A comprehensive multiple sclerosis registry is therefore highly desirable, both from a health economic perspective and to ensure the targeted use of limited resources. To date, there has been no systematic attempt to collect the necessary data in Germany. To address this deficit, a nationwide registry was initiated in 2001 under the auspices of the German MS Society (Deutsche Multiple Sklerose Gesellschaft Bundesverband e.V.) with the aim of providing cross-sectional data on the frequency of MS and its subtypes in Germany. Another objective was to obtain information on the distribution of disease severity, the effect of MS on patients' ability to work, and the use of immunomodulatory, symptomatic, and non-pharmacological treatments. Following the 2-year pilot phase, in which 3223 patients took part (3), we present here the results of the extension phase of the study.