Multiple sclerosis registry in Germany: results of the extension phase 2005/2006.

Introduction: In 2001, a nationwide multiple sclerosis (MS) registry was initiated in Germany under the auspices of the German MS Society, (DMSG Bundesverband e.V.). The project aimed at collecting epidemiological data and information on health care provision for MS patients in Germany.

Methods: After a 2-year pilot phase, the original entry mask was modified, and new centers were recruited, resulting in the registration of a total of 5821 patients in 2005 and 2006. Following a 2 stage quality control process, standardized data sets for 5445 patients (93.5%) were able to be analyzed.

Results: Mean duration from onset of disease to diagnosis was 3.5 years. More than 70% of patients received immunomodulatory drugs, whereas symptomatic treatments were less commonly administered. The number of participating centers as of 31 December 2006 was 57 (29 neurological hospitals, 11 rehabilitation units, 13 specialized practitioners, and 4 regional MS centers).

Discussion: The MS registry provides valuable data on patterns of care for MS patients in Germany, and may help to improve service provision and overall quality of life for these patients.