The Netherlands ME/CFS Cohort and Biobank (NMCB)

Description

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. 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. 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. (Description adapted from research network website: see link above)