The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium is a national collaboration of research institutes, patient organisations and clinical centres. The consortium focuses on biomedical research on ME/CFS.

One of the activities of the consortium is the establishment of a comprehensive patient cohort and biobank. In this regard, attention is given to the inclusion of severely ill patients and the application of international diagnostic standards. The biobank collects medical patient data and patient material for scientific research and the cohort forms a patient registry for conducting clinical studies.

Building on this infrastructure, and in close cooperation with patient organisations, researchers within this consortium will conduct studies aimed at gaining more insight into the underlying mechanism of the onset of ME/CFS. The emphasis is on developing new methods for treatment and diagnosis.

The consortium will enter an eight-year collaboration with the ambition to develop a sound understanding of the mechanisms causing ME/CFS and to see this knowledge translated into better treatments and diagnosis.

Goal

The aim of this project is to realise a national infrastructure for biomedical research on ME/CFS, in which universities, teaching hospitals and other research centres cooperate as broadly as possible. Setting up a national patient cohort and biobank is an essential part of this. Here, strong efforts will be made for (inter)national cooperation,  harmonisation of methods and exchange of data.

Approach

The NMCB consortium aims to meticulously implement the Dutch ME/CFS research agenda; in the creation of this agenda, Dutch patient organisations have had a major role. Setting up the national research infrastructure (described above) is an important part of this. The consortium thus provides a national infrastructure for scientific collaboration in which high-quality patient data are collected and made available for multidisciplinary biomedical research. 

In the NMCB consortium, patient participation plays a major role. Several patient organisations are co-applicants of the research projects and patients and patient organisations are also involved in the execution of research. Patient organisations are also part of the board of the NMCB consortium.  

Sub-studies

As a broad national coalition of research institutes, patient organisations and clinical centres, the NMCB consortium will jointly conduct research on highly relevant research themes. The research projects test innovative hypotheses that can lead to a thorough understanding of ME/CFS and, by extension, better diagnostics and treatment options:

National and international collaboration

The aforementioned studies are conducted in collaboration with ME/CFS biobanks and researchers in Great Britain, Germany, the US, Canada, and Australia. There are also national collaborations, including ME/CFS Lines (the other funded consortium). An effort is made to  work on data harmonization and (inter)national exchange of data among all partners. This type of collaboration has been shown to lead to reliable results and implementation of new treatments more quickly. To this end, the consortium works according to the FAIR principles, making data also usable by other researchers worldwide, enabling many new approaches. 

The NMCB consortium will also build a bridge between ME/CFS research and research on syndromes that have strong similarities in terms of symptoms and impact, such as Long-COVID, Lyme disease and the long-term effects of Q-fever. This will be done in part by collaborating with existing cohorts and biobanks (e.g. of Long-COVID and Lyme patients), with these patient groups also being studied within the NMCB consortium. 

Collaboration partners

Several partners are involved in this project. The collaborating parties are: 

  • Amsterdam Universitair Medisch Centra (projectleider)
  • GGD Amsterdam
  • Radboud Universitair Medisch Centrum
  • Utrecht Universitair Medisch Centrum (UMCU)
  • Erasmus Universitair Medisch Centrum 
  • Leids Universitair Medisch Centrum (LUMC)
  • Universitair Medisch Centrum Groningen (UMCG)
  • Maastricht Universitair Medisch Centrum (MUMC)
  • Vrije Universiteit
  • Universiteit van Amsterdam
  • Nederlandse Hersenbank en het Nederlands Herseninstituut
  • Rijksinstituut voor Volksgezondheid en Milieu (RIVM)
  • Vermoeidheidkliniek
  • Stichting Cardiozorg
  • ME/CVS Nederland
  • Steungroep ME en Arbeidsongeschiktheid
  • ME/cvs Vereniging Nederland

International collaborative partners include: UK ME/CFS biobank, Solve ME, Open Medicine Foundation (OMF) and Charite Berlin.

Last but not least, the consortium actively contributes to the dissemination of knowledge and recent research results to various stakeholders ('stakeholders') including patients, policy makers and physicians involved in the treatment of ME/CFS.

(Expected) Results

The consortium expects to deliver the following results: 

  • National and international collaboration between research institutions, patient organizations and clinical centers that brings together researchers from multiple biomedical disciplines, thereby ensuring cross-fertilization between fundamental, epidemiological and clinical research. 
  • The formation of a multi-disciplinary and multi-center research program that generates biomedical knowledge about the origin, diagnosis and treatment of ME/CFS. 
  • A large-scale national patient registry and biobank, with attention for inclusion of severely ill patients (25%) and application of international (diagnostic) standards.
  • A FAIR and open access data infrastructure. This ensures harmonization and collaboration with international ME/CFS biobanks and national cohorts focused on Post-infectious Fatigue Syndromes such as Long Covid, Lyme disease and Q fever. 
  • A consortium board in which ME/CFS patient organizations serve as co-decisionmakers and which provides an organizational framework for sustainable collaboration. 
  • Active and multi-stakeholder dissemination of results and scientific expertise to improve the treatment of patients and their position in society. 
  • Training a new generation of talented young researchers who want to become proficient in ME/CFS research.

Features

Project number:
10091012110027
Duration: 9%
Duration: 9 %
2023
2031
Part of programme:
Related funding round:
Project lead and secretary:
Dr. J.A. (Jos) Bosch
Responsible organisation:
Amsterdam UMC Locatie AMC