Starting today, people with post-COVID can sign up to take part in scientific research. They can register through the national portal at postcovidonderzoek.nl, which is part of the Post-COVID Network Netherlands. The aim is to provide a single online portal for everyone in the Netherlands who has been diagnosed with post-COVID and wants to take part in research. The portal will be used to monitor which symptoms these people have, how common the symptoms are, and how they change over time. It will also assess whether these people would be willing to take part in other scientific research on the disease, and if so, which types of research.
When people sign up at postcovidonderzoek.nl, they can complete a survey. The survey contains questions about their health, symptoms and medicine use. It takes about 20 to 30 minutes to complete. After that, they take a short survey every 3 months, which is a shorter version of the same questionnaire. This is intended to get a clearer overview of which symptoms are currently present in people with post-COVID. It will also help show how these symptoms develop over time.
Invitations for more specific research
Through the portal, people can also state whether they would like to take part in other scientific research on post-COVID. This makes it possible for the network to invite people who are already interested. If there is a specific study on a medicine to treat brain fog, for example, the portal makes it possible for the network to contact people with brain fog who are interested in that kind of research.
Better diagnosis and treatment
Experience-based experts on post-COVID are pleased that there is now a central option for everyone to sign up for research. “Everyone knows someone who was never the same after having COVID-19. Those people need a better diagnosis and better treatment. This portal is an important step towards that goal.”
National alliance in Post-COVID Network Netherlands
The Post-COVID Network Netherlands was established at the start of 2024 under the guidance of Leiden University Medical Center (LUMC), commissioned by the Ministry of Health, Welfare and Sport (VWS) and funded by the Netherlands Organisation for Health Research and Development (ZonMw). Patients, researchers, care professionals and partners in Dutch society come together in the network to collaborate on and harmonise scientific research and patient care for people with post-COVID. The network is a national alliance of hospitals, university medical centres, patient organisations, paramedical partners, and organisations such as the National Institute for Public Health and the Environment (RIVM), the Netherlands Institute for Health Services Research (NIVEL) and C-Support.