The association
A portrait of the KKNMS
Network
Interdisciplinary networking of MS research
Multiple sclerosis (MS) is still incurable and the causes of the disease are still not sufficiently understood. The individual course is therefore difficult to predict. According to projections, at least 200,000 people in Germany are affected – two thirds of whom are women.
As a network of German universities, scientific institutions and associated MS treatment centers, we want to change this situation. The focus of our projects is therefore on the long-term improvement of MS diagnosis, treatment and quality of care.
The Disease-Related Competence Network Multiple Sclerosis (Krankheitsbezogenes Kompetenznetz Multiple Sklerose; KKNMS) is one of the competence networks in medicine that was initiated by the Federal Ministry of Education and Research (BMBF) to bring together researchers on specific diseases on a nationwide and interdisciplinary basis with the aim of improving patient care.
Association
Ensuring continuity
The non-profit association Krankheitsbezogenes Kompetenznetz Multiple Sklerose e.V. as a separate legal entity provides the KKNMS with the necessary capacity to act and ensures the sustainability of the network and the project work – even beyond the period of completed BMBF funding (2009 to 2019). The KKNMS e.V. was founded in Munich at the beginning of the first BMBF funding period in March 2010.
The KKNMS is the point of contact for doctors, companies, patients and associations and has the task of further networking MS research in Germany and ensuring the rapid transfer of new findings into practice.
The current registered office of the association is in Münster.
Funding
Financing the network
The KKNMS was initiated by the BMBF and initially largely financed by public funding. These were primarily earmarked for research projects, cohort and registry studies and the network’s infrastructure. The free services offered by the KKNMS for quality assurance in MS care (e.g. the quality manual) are financed by donations. Today, the KKKNMS is a purely donation-funded association.
The KKNMS was supported by the BMBF from 2009. In the first funding period from 2009 to 2012, the network received EUR 7.4 million in support for the first research projects and the development of the network infrastructure. The application for an extension of funding from the BMBF for 2013 to 2015 was approved – with a sum of EUR 7.3 million, the KKNMS was able to continue research projects and initiate new ones. In the third funding phase from 2016 to 2019, the network was awarded a total of EUR 7.2 million, enabling a total of 21 clinical and basic research projects to be carried out.
In addition, the KKNMS has endeavored to stabilize its activities by establishing alternative financing options. The foundation of a non-profit association allows the network to become active in the area of fundraising and to raise donations. Since 2020, the KKNMS has been financed exclusively by donations. It receives these from both private individuals and companies. Further information on this can be found in the annual reports of the KKNMS e.V.
People
Management Board
The KNNMS Executive Board consists of seven members and was elected in its current composition by the General Assembly on November 30, 2021 for the next three years.
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Prof. Dr. Heinz WiendlSpeaker -
Prof. Dr. Frauke ZippDeputy Spokeswoman -
Prof. Dr. Ralf GoldAssessor -
Prof. Dr. Martin KerschensteinerAssessor -
Prof. Dr. Tania KümpfelSecretary -
Prof. Dr. Ralf LinkerAssessor -
Prof. Dr. Mathias MäurerTreasurer
Office
Networking, planning, organizing
The KKNMS office supports the board, members and committees in their tasks. It is responsible for press and public relations work for the network and is also increasingly involved in fundraising, which is intended to put the activities of the KKNMS on a financial footing beyond the BMBF funding. The office is located at Münster University Hospital.
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Dr. Zoë HunterManagement
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Julia KwiatkowskiSecretariat
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Marcel RaussAccounting
Ordinary
Members
The KKNMS e.V. currently has 46 full members.
Supporting members
Private individuals and public institutions can support the association’s work as sponsoring members. An application for supporting membership can be submitted informally to the KKNMS Board and sent to the office. The amount of the grant is freely selectable.
Associates
Members
In addition, it is possible to associate your own scientific projects with the KKNMS and thus use the data and biosamples collected as part of the NationMS cohort. A formal application must be submitted for this, on which the Expert Committee on Data, Biomaterial Utilization, Ethics and Data Protection (FaBIO) decides.
The KKNMS Board or the General Meeting decides on the admission of new members.
Study centers
Networked throughout Germany
MS study centers have been participating in the NationMS 1 cohort study of the KKNMS for over 10 years, in which patients were recruited for the study and continue to be cared for in follow-up visits.
The NationMS Cohort is one of the largest MS-specific cohort studies in Germany with over 5,500 visits in 1,374 patients with early MS from 22 participating study centers. In our network map you can get an idea of the locations of the 17 currently active study centers.
Task Forces
Advice from (inter)national MS experts
The Disease-Related Competence Network Multiple Sclerosis (KKNMS) is supported by high-caliber scientific expert committees (task forces) in an advisory capacity.
External databases
The Multiple Sclerosis Competence Network manages medical data, biosamples and MRI images of MS patients for research purposes in separate databases in strict compliance with data protection regulations. Please select the desired database below. The respective login page will then open in a new window. Then log in with your personal user name and password for this database. If you have forgotten your access data, please contact the Central Information Office.