Research project
PoCARD study – post-covid: is it acknowledging, recognizing or defining?
How can we ensure that the group of participants on the Post Covid Network Netherlands portal is as representative as possible of the entire Dutch PCS population?
- Duration
- 2026 - 2027
- Contact
- Biance Boxma-de Klerk
- Funding
- Kiem grant (Leiden University)
The Post-COVID Network Netherlands (PCNN) is a national network that supports research into post-COVID and provides the necessary infrastructure. One of its facilities is the PCNN portal, where people with self-reported post-COVID syndrome (PCS) can voluntarily register and indicate whether they may be contacted to take part in scientific research.
The PCNN portal has been continuously collecting data from people via questionnaires since 2024. Researchers recruit their participants through this portal; this makes research easier to carry out and less burdensome for patients. To be valuable, the group of participants in the portal must resemble the entire Dutch PCS population as closely as possible. This is not currently the case: older people, men, people of low socio-economic status and people from migrant backgrounds are under-represented, whilst national diagnosis figures are also lacking due to the absence of a reliable test, leading to under-diagnosis.
Research objective
This new project is part of a larger project that maps the distribution of PCS patients within the portal, investigates why certain groups are or are not diagnosed, identifies systemic factors underlying under-representation, and develops strategies to improve participation and the recognition of PCS. The central question is: is it primarily a matter of recognition, identification or definition?
Interdisciplinary approach
This KIEM application is intended to enable the deployment of student assistants in carrying out the component of the project that involves identifying why certain groups are or are not diagnosed and systemic factors (both hindering and facilitating) underlying under-representation. This requires, above all, qualitative research. This type of research is currently carried out only to a very limited extent within the Department of Clinical Epidemiology, and requires additional methodological expertise from the social sciences. This application promotes collaboration between the social sciences and clinical epidemiology and marks the first such collaboration in the area of Post-COVID.