Post-COVID Network Netherlands

The Post-COVID Network Netherlands is a national partnership in which patients, scientists, healthcare professionals and community partners work together to align scientific research and patient care for people with post-COVID. This coordinated approach systematically and efficiently develops the knowledge needed to better understand post-COVID, improve diagnoses and develop more effective treatment options. The network actively promotes the use of all relevant knowledge to continuously improve the care of people with post-COVID.

Aim

The Post-COVID Network Netherlands was established to develop knowledge about post-COVID in the Netherlands in a more systematic and efficient way, and to use this newly acquired knowledge as quickly and effectively as possible in the care of people with post-COVID. This includes insights into biological processes, insights that could improve in diagnosis, prognosis and treatment, and an understanding of how to organise care for all adults and children with post-COVID in the Netherlands.

Approach/Procedure

The Post-COVID Network Netherlands partnership is organised in a matrix structure (see Figure 1). There are seven work packages, each responsible for a specific sub-area, with four intersecting platforms addressing issues relevant to all work packages.

Image
Post-COVID Network Netherlands matrix
Figure 1: Matrix Post-COVID Network Netherlands

 

Work package 1 
Provides overall management. 
Work package 2 
Supervises data: it identifies available data on post-COVID available from previous Dutch research, makes these data accessible for new studies, ensures adequate accessibility for new data to be collected, and collects new data to support care evaluation research.
Work package 3 
In this work package, a biobank will be established in which biological material such as blood and faeces from adults and children will be stored in freezers for scientific research.
Work package 4 
Translates findings from clinical practice to laboratory research and vice versa; it searches, among other things, for druggable targets and conducts small-scale, early-phase experimental research. Druggable targets are substances in the body that are specific to people with post-COVID and that could be targeted by drugs.
Work package 5 
In this work package, the network lays the groundwork for large-scale comparative clinical research in the form of a platform trial to investigate the effects of promising treatments. 
Work package 6 
Organises laboratory research into the underlying pathophysiological mechanisms to find leverage points for treatments and improved diagnostics. 
Work package 7 
This work package focuses on improving the organisation and evaluation of care for adults and children with post-COVID throughout the Netherlands. 

Platform 1 
Oversees the methodology of all research activities, from the choices made during research design to the interpretation of research results. 
Platform 2 
This platform consists of a large group of experts by experience who actively preserve the patient perspective in the activities of all work packages. 
Platform 3 
Oversees the ethical aspects of all network activities. 
Platform 4 
Ensures the dissemination of existing and new knowledge to healthcare professionals and patients. 

Partners

The network is open, supportive and dynamic. The current project group is committed to using the network to support a diverse range of representatives from healthcare organisations and scientific research in the field of post-COVID in the Netherlands. The network also supports other stakeholders involved in the care of people with post-COVID, such as the Ministry of Health, Welfare and Sport (VWS), the Dutch Healthcare Authority (NZa), the National Health Care Institute, healthcare insurers and the Employee Insurance Agency (UWV). At the start of the project in March 2024, the network consisted of just over 100 people, including hands-on experts, scientists, healthcare professionals and social partners from 38 different organisations. See the list of partners here.

(Expected) results

The Post-COVID Network Netherlands partnership will take on its final, sustainable form over the course of three years. The work packages and platforms will deliver end products that serve as the foundation for improving care for both adults and children with post-COVID in the Netherlands, now and in the future. Moreover, these outputs will support the organisation, coordination and execution of patient-relevant scientific research on post-COVID.

Among other things, the Post-COVID Network Netherlands provides a digital research environment for post-COVID research in the Netherlands. In this environment, data from old and new post-COVID research will remain accessible for possible future research questions. The network also creates a portal where people with post-COVID can indicate the type of research they would like to participate in. The network is establishing agreements and developing protocols for a harmonised approach to future fundamental (focused on basic mechanisms) and applied, clinical post-COVID research, so results from different studies can be effectively combined and understood. All this will be done in close coordination and collaboration with international initiatives in the field of post-COVID and other post-acute infection syndromes (PAIS) such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 

As a result, (international) research in these areas can be well coordinated and the data obtained can be used for other studies. The network also actively and systematically disseminates knowledge to professionals and patients. Based on the latest insights, the network is developing care pathways specifically tailored to the different ways in which the disease can manifest. 

Features

Project number:
11080012310002
Duration: 26%
Duration: 26 %
2024
2027
Project lead and secretary:
prof. dr. Anske van der Bom
Responsible organisation:
Leids Universitair Medisch Centrum