The MS Registry


In 2001, the German Multiple Sclerosis Society (DMSG) initiated the installation of a Multiple Sclerosis Registry (MS Registry) for Germany. For this purpose, the MS Research and Project Development gGmbH (MSFP) was founded to manage the MS Registry. In 2005, the MS Registry started regular operations and has been continually developed and expanded since then.
Most recently, almost 13,000 patients per year were reported by the centers listed by the DMSG. On average, two consultations per patient and year were  documented.

Awards for (rehab) clinics and practices based on the guidelines of the DMSG, Bundesverband e.V.

Participation in the MS Registry of the DMSG, Bundesverband e. V. is a prerequisite for receiving the certificate "MS Center", "Specialized MS Center", and "MS Rehabilitation Center", awarded by the DMSG. The certificates are awarded to university clinics, acute care clinics, rehabilitation clinics, MS outpatient clinics, and neurological practices if they meet the specified criteria. Adherence must be confirmed every two years. The criteria catalog developed by independent MS experts focuses on a guideline-based treatment by neurologists and professionals specialized in MS, as well as on disabled accessible equipment of the facility. Depending on the center type, a minimum number of MS patients must be treated per year in the centers.

Part of these treated MS patients must be re-corded in the MS Registry. MS Special Centers thus must document at least 150 data sets per year, MS Rehabilitation Centers at least 80 or 120, and MS Centers at least 80. At the moment, the DMSG has decorated 70 centers as "Specialized MS Center", 94 as "MS Center", and 19 as "MS Rehabilitation Center". The geographic distribution of the centers in Germany is mostly homogen, with a slight West-East and South-North gradient as well as clusters in metropolitan areas. You can find the exact distribution and number of centers here.

Current results from the MS Register of the DMSG

In September 2022, the proportion of women with MS compared to earlier analyses remained nearly unchanged at 70.9%. The mean age was 47.5 (± 12.5) years, while the mean age at the disease onset was 33.2 (±10.7) years. On average, it takes 1.6 (± 3.8) years from symptom onset to MS diagnosis. 74.4% of the documented MS patients have relapsing-remitting MS (RRMS), 15.7% secondary progressive MS(SPMS) and 6.9% primary progressive MS(PPMS). 1.6% had a clinically isolated syndrome (CIS) and 1.3% could not be clearly classified. The mean EDSS score (a measure of the degree of disability) was 3.2 (± 2.2).

The article "Severity of COVID-19 infection among patients with multiple sclerosis treated with interferon-β", published in 2022 in Multiple Sclerosis and Related Disorders, addresses the question of whether interferon-β, a disease-modifying therapy (DMT) for MS, leads to less severe COVID-19 disease in MS patients. The underlying international cross-sectional study (2020-2022) involved 11 independent registries and cohorts from 27 countries. The analysis sample included 5,568 people with MS with suspected or confirmed COVID-19 disease (83.4% confirmed COVID-19 cases). Participants were predominantly female (73.1%), <50 years old (66.3%), often had a relapsing-remitting form of the disease (84.3%) and had a low degree of disability (EDSS 0-6; 81.8%). Most of the patients were treated with DMTs (91.3%), of which 5.4% were treated with interferon-β. Compared with other DMTs, there was no evidence of a protective effect of interferon-β on the severity of COVID-19, although the course of COVID-19 was milder in those treated with interferon-β compared with the untreated. As a result the study does not support the use of interferon-β as a treatment to reduce COVID-19 severity in people with MS.

The following evaluation, which appeared as a graph of the quarter* in the DMSG-journal aktiv! Nr. 276 3/2022, examines whether the incidence (new cases occurring) of the symptom fatigue shows changes during the COVID-19 pandemic. The chart below shows the incidence (in %) of the symptom fatigue for the calendar years 2018-2022.


If we look at the seasonal development of fatigue during the COVID-19 pandemic, we see seasonal patterns that could already be observed before the pandemic: Especially in the autumn and winter months, there is an increased risk of a new or repeated occurrence of fatigue. Thus, fatigue occurs in ≤5.5% of MS patients in the summer months, and 1-2% more frequently in the winter months from January to March. During the COVID-19 pandemic, this pattern remained relatively stable. However, the increase in the winter of 2022 was statistically significantly higher than in the winters of the previous year. At the same time, there was a large number of COVID-19 cases in the general population. Overall, the evaluation of the German registry data shows a slight increase in fatigue among MS patients, which could be related to the COVID-19 pandemic. In addition to infection and vaccination, psychological stress during the pandemic is also a possible factor.

All published MS Registry publications can be downloaded at Publications.

* Since January 2020, the website of the German MS Society at quarterly presents analyses from the MS Registry on various topics.

Joint congress of ACTRIMS and ECTRIMS

At the joint congress of ACTRIMS and ECTRIMS (American and European Committee for Treatment and Research in Multiple Sclerosis), the MS Registry was represented as part of the SPMS research collaboration network (RCN) with three virtual contributions. While Lars Forsberg presented the results of the validation of three different methods for the classification of MS patients into relapsing or secondary progressive forms, Jan Hillert focused on the characteristics of patients with SPMS misclassified as RRMS. Data from MS registries in Denmark (10,255 patients), Germany (23,185 patients), United Kingdom (5,086 patients), Sweden (11,247 patients), and the Czech Republic (11,336 patients) were used for the RCN studies. Using the decision tree classifier of the Karolinska Institute, a total of 8,372 RRMS patients were reclassified to SPMS in the five registries, increasing the overall proportion of SPMS patients from 17% to 31%. The overall proportion of clinically determined SPMS patients on disease-modifying therapy (DMT) was 36%, but varied widely between the registries. The overall proportion of newly assigned SPMS patients on DMT was significantly higher at 69%. The conclusion of the study is that SPMS patients on DMT are often clinically misclassified as RRMS patients. This raises questions about the use of the time from MS onset to the conversion of relapsing to secondary progressive MS form as a measure of the efficacy of DMTs and argues for the use of objective categorization methods when analyzing MS patient populations.

MS Registry documentation

Since 2014, there has been a web-based, platform- and device-independent research database for the documentation of MS Registry data. The research database relies on established tools and the concepts of the TMF e. V. for collaborative research. It is also possible to integrate so-called patient-reported outcomes (PRO), for instance for quality of life data that are self-documented by the patients via app or web.

Quality & data Management

Using implemented value range and plausibility controls, the research database recognizes and reports incorrect information already at the time of entry. In addition, downstream quality control in combination with query management ensure data quality.

International cooperation

The MS Registry participates in the EMSP-Initiative "Multiple Sclerosis Data Alliance" (MSDA), whose main purpose is to implement a minimal data set and quality standards, approved by the European Medicine Agency (EMA), in as many MS data registries and cohorts as possible in order to enable the use of registries for questions of safety and efficiency of MS therapies in the future. Since the beginning of the Corona pandemic, the MS Registry has participated in the Global Data Sharing Initiative of MSDA and the MS International Federation on COVID-19. The latest analyses conclude that the use of anti-CD20 agents (both ocrelizumab and rituximab), as well as male gender, older age, progressive MS and higher disability are associated with more severe course of COVID-19. The results were recently published in Neurology as "Updated Results of the COVID-19 in MS Global Data Sharing Initiative".

Supporters of the MS Registry

The MS Registry of the DMSG has been financed since 2001 by the DMS Foundation and the DMSG, Bundesverband e. V. The MSFP receives project funding from the Innovation Fund of the G-BA and the German Pension Insurance (DRV Bund), among others. Since 2018, companies from the pharmaceutical industry have also been supporting the MS Registry as part of a multistakeholder funding. This primarily supports the establishment and operation of the recording of adverse events.

In 2018, the MSFP received financial support from Novartis and Merck Serono, which was used, among other things, to implement the EMA recommendations of a harmonized registry dataset. In 2019, Biogen and Celgene (BristolMeyerSquibb) joined the multistakeholder sponsorship. In 2020, the registry operations, particularly in the area of drug safety and the payment of documentation fees to participating centers, was supported by Biogen, Bristol Myers Squibb, Merck, Roche, and Sanofi with unified contributions. In 2021 and 2022, Biogen, Bristol Myers Squibb, Merck, Novartis, Roche and Sanofi participated with uniform contributions. The 2023 operation of the MS-Registry was supported by Biogen, Bristol Myers Squibb, Merck, Novartis Pharma and Roche. In 2024 Bristol Myers Squibb, Merck, Novartis Pharma and Roche continue to support the Registry and are joined by TG Therapeutics.