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

Project summary

The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium, in partnership with patient organizations, is leading the way for the development of a national research infrastructure for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS). ME/CFS is a condition that disrupts patient’s lives and causes great suffering with an estimated 40,000-150,000 patients in the Netherlands.  

The necessity for this initiative has been recognized by the Dutch Health Council (Gezondheidsraad). A national infrastructure for data and sample collection will increase the investment in biomedical research into ME/CFS. This need is amplified by the stigmatization of ME/CFS and its significant socio-economic impact.  

Adhering to ZonMw's "ME/CFS Research Agenda”, the core activity of the NMCB is to establish a national patient cohort and biobank at the Amsterdam UMC while building a collaborative research infrastructure. This infrastructure will enable the validation of biomedical hypotheses for a profound mechanistic insight into ME/CFS and other Post- Acute Infectious Syndromes (PAIS), fostering rational diagnostics and effective treatments. 

Leveraging the collective expertise of all 7 Dutch University Medical Centers in the consortium, the NMCB prioritizes open access and practices FAIR data management, ensuring the data and biological materials are utilized to enhance patient well-being and societal integration.  Recently this consortium was provided additional funding to extend its portfolio to include post-COVID. 

Social impact

Within the context of these ill-understood and highly stigmatized conditions, FAIRification will have a major social impact. ME/CFS and post-COVID research has been plagued with inconclusive results that can be attributed to small sample sizes and siloes of research.  

Making research data in the field of ME/CFS FAIR can facilitate data integration in a consistent and reliable manner and optimize the data (re)use and comparison, which can accelerate the research and understanding of these diseases and developing accurate procedures for diagnosis.  

Furthermore, the application of FAIR data promotes greater transparency, data sharing, and collaboration across research initiatives, fostering an environment where scientific discovery is propelled by open and accessible knowledge. 

FAIR objectives

The major objective is to build the data infrastructure for ME/CFS research and other Post-Acute Infectious Syndromes (PAIS) for instance, post-COVID, Q-fever. Ost-Lyme), complying with FAIR data principles. Such infrastructure should enable resource discovery, data query and the compatibility of data exchange with national and international partners.  

To achieve this, the challenges are:  

  • the harmonization of the diverse cohort and biobank data throughout Europe and North America to optimize the (re)use of ME/CFS and post-COVID data stored in different data systems. 
  • the determination of metadata for facilitating the discoverability and reusability of NMCB resources. 
  • the establishment of the NMCB FAIR Profile for guiding and sharing FAIR implementation choices. 
  • the construction of semantic mappings between the NMCB data and FAIR-enabled standards such as ontologies and data models. 

FAIR elements involved

Findable

Accessible

Interoperable

Reusable

 

Key facts

  • Myalgic encephalomyelitis/chronic fatigue syndrome 
  • Post-ACUTE Infectious Syndromes (PAIS) 
  • Post-COVID 
  • Post-acute Lyme Disease 
  • Post-acute Q fever 
  • Patient reported outcomes 
  • Biobank and cohort data 
  • Involvement of patient organizations 
  • FAIR-compliant research data infrastructure for ME/CFS and post-COVID 

Data types

  • Clinical data 
  • Questionnaire data 
  • Biomaterials / samples 
  • Imaging 

Read more

The NMCB Official Website 

Project description in ZonMw 

Funding

ZonMW  

Data Champions

Organizations

Dutch University Medical Centers: 

  • VUmc (falls under Amsterdam UMC) 
  • Radboud Universitair Medisch Centrum (RUMC)
  • Universitair Medisch Centrum Utrecht (UMC Utrecht)
  • Erasmus Universitair Medisch Centrum (Erasmus MC)
  • Universitair Medisch Centrum Leiden (LUMC)
  • Universitair Medisch Centrum Groningen (UMCG)
  • Maastricht UMC+

Dutch Universities 

  • Radboud Universiteit 
  • Universiteit Maastricht  (UM),  
  • Vrije Universiteit Amsterdam (VU) 
  • Univeriteit van Amsterdam (UvA) 
  • Leiden Universiteit LU) 

Rijksinstituut voor Volksgezondheid en Milieu (RIVM) 

Koninklijke Nederlandse Academie der Wetenschappen (KNAW) 

  • Nederlands Herseninstituut (NIN)

 GGD Amsterdam  

 

 International post-COVID and ME/CFS Biobanks and Patient Registries 

  • UK ME/CFS biobank  
  • Solve ME Registries (US, Canada , Autralia) 
  • Open Medicine Foundation (OMF) exepertsie center registries 
  • Charite Berlin ME/CVS and post-COVID Registry and Biobank  
  • Technical University Munich ME/CVS and post-COVID Registry and Biobank 

Specialized clinics for post-COVID and ME/CVS care 

  • Vermoeidheidkliniek  
  • Stichting Cardiozorg  

 Dutch Patient Organisations  

  • ME/CVS Nederland  
  • Steungroep ME en Arbeidsongeschiktheid  
  • ME/cvs Vereniging  
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