Patients characteristics influencing the longitudinal utilization of steroids in multiple sclerosis--an observational study.

BACKGROUND: Multiple Sclerosis is the most common disease in young adults affecting the central nervous system. Disease may progress with acute attacks (relapsing MS) or continuously (progressive MS). Glucocorticosteroids are used in the treatment of acute attacks. The aim of this study was to analyse characteristics of patients with MS, and their influence on current treatment patterns of relapses with glucocorticosteroids. DESIGN: In 2001, the German National MS Society initiated the German MS-Registry. Patients with relapsing MS were included (n = 5106) from this registry. Logistic regression models were used to detect trends over time. The likelihood of administration of steroids is modelled in dependence of calendar year and in dependence to confounders in treatment conditions. The sample size allows that odds ratios can be detected with a power of 90% (alpha = 0.05). RESULTS: Administration of glucocorticosteroids was influenced by EDSS (P < 0.0001), age (P < 0.0001) and disease duration (P < 0.0001). Therapy administration in an outpatient setting was more likely in patients with higher EDSS (P < 0.0001) and longer disease duration (P < 0.0001). The utilization of glucocorticosteroids increased with higher EDSS for all relapsing patients. Interestingly, all overutilization of glucocorticosteroids decreased over time and was accompanied by a steadily increased administration of emergent therapeutics. Although there are about 70% of registered patients with relapsing MS on immune-modulatory treatment, almost 60% of them received glucocorticosteroids for treatment of relapses. CONCLUSIONS: Treatment patterns with glucocorticosteroids in patients with MS are influenced mainly by EDSS and disease duration. The decline in the utilization of glucocorticosteroids is accompanied by an increase in natalizumab treatment.

Multiple sclerosis registries in Europe - results of a systematic survey.

BACKGROUND: Identification of MS registries and databases that are currently in use in Europe as well as a detailed knowledge of their content and structure is important in order to facilitate comprehensive analysis and comparison of data. METHODS: National MS registries or databases were identified by literature search, from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire was developed and sent to the registries' leaders, followed by telephone interviews with them. RESULTS: Twenty registries were identified, with 13 completing the questionnaire and seven being interviewed by telephone. These registries differed widely for objectives, structure, collected data, and for patients and centres included. Despite this heterogeneity, common objectives of the registries were epidemiology (n=10), long-term therapy outcome (n=8), healthcare research (n=9) and support/basis for clinical trials (n=8). While physician-based outcome measures (EDSS) are used in all registries, data from patients' perspectives were only collected in six registries. CONCLUSIONS: The detailed information on a large number of national MS registries in Europe is a prerequisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations.

Symptomatology of MS: results from the German MS Registry.

Since 2002, an MS Registry has been implemented by the German MS Society in more than 100 German MS centres. The objective is to provide information about disease characteristics, and to monitor the health care situation in a large population of patients. The aim of this report is to give detailed results on MS symptoms. By October 2008, data sets from 16,554 patients were recorded by 86 centres. A strikingly high number of persons suffered from fatigue and other "invisible" symptoms during early and late stages of the disease, underscoring the negative impact of these symptoms on quality of life in MS patients.

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.