Cohort studies

NationMS cohort study

Observing the progression of multiple sclerosis and identifying side effects

Clinical studies help to better understand a disease. The observation of a larger number of patients over a certain period of time reveals similarities and differences in the course of the disease and response to therapy and, in the best case, can even be linked to certain medical parameters.

One of the core projects of the KKNMS is the NationMS cohort study, which has been running since 2010 and was extended for a further 6 years of follow-up in 2023. Even after the end of BMBF funding 2019, ongoing and new projects build on this long-term study cohort or use the associated infrastructure of the KKNMS.

The National Multiple Sclerosis (NationMS) cohort now comprises approximately 5,500 visits from 1,374 patients from 22 participating study centers. This makes the NationMS cohort one of the largest MS-specific cohort studies in Germany and thus contributes significantly to the understanding and development of MS research in Germany.

Since 2016, the NationMS cohort study has been joined by a NationNMO cohort with the aim of comparing the patients in both cohorts and thus refining diagnostic criteria.

NationMS 2

Better prediction of the course of early MS

In the new NationMS 2 cohort study, demographic, clinical, imaging and laboratory data will be collected in a systematic and standardized way over several years. State-of-the-art immunology, molecular biology and magnetic resonance imaging (MRI) techniques are used for this purpose. The MRI results and the clinical documentation of early symptoms are supplemented by analyses of neuropsychological test results and measurements of MS-related fatigue (exhaustion). We are building on our previous experience with MS-related neuropsychological projects.

The aim is to create a database with prospectively defined data on people with MS in Germany. Subsequently, for example, prognostic biomarkers associated with the risk of further progression of early-stage MS will be investigated. A better understanding of how and when MS progression starts and identifying early indicators could open up new treatment options to delay or even prevent disease progression.


NEMOS – Neuromyelitis optica Study Group

Although multiple sclerosis, neuromyelitis optica (NMO) spectrum disorders (NMOSD) and MOG antibody-associated diseases (MOGAD) can have similar clinical manifestations, the diseases differ in important aspects, particularly in their course, prognosis and response to therapy. NMOSD and MOGAD are now considered diseases in their own right. Studies comparing these diseases are advancing research and patient care.

As part of the BMBF funding phase, the NationMS cohort study was in 2016 joined by an NMOSD cohort (NationNMO) with 250 patients, with the aim of comparing the patients in both cohorts in order to identify new parameters for predicting the course of the disease. Patients with NMOSD and MOGAD continue to be recorded in the Neuromyelitis Optica Study Group (NEMOS) registry and there is ongoing collaboration between NEMOS and the KKNMS, particularly in the context of the MS, NMOSD, MOGAD quality manual with information for doctors and patients on the diagnosis and treatment of the diseases.