As of today, people with post-COVID or long-term complaints after a COVID-19 vaccination can register to participate in scientific research via the national portal, postcovidonderzoek.nl. This portal is part of the Post-COVID Network Netherlands. The aim is to include people in the Netherlands with a post-COVID diagnosis who want to participate in research in one online portal so that it can be monitored what complaints people have, how often these complaints occur and how these complaints change over time. In addition, an inventory is made of whether these people also want to participate in other scientific research into the disease, and if so, what type of research.
When people sign up on postcovidonderzoek.nl, they can fill out a questionnaire. This contains questions about their health, complaints and medication use. It takes about 20 to 30 minutes to fill out. After that, they will receive a short version of the same questionnaire every 3 months. This should make it clear what complaints people with post-COVID now have. And how these complaints develop. People can also go here for frequently asked questions.
Asking targeted people for research
People can also use the portal to indicate whether they want to participate in other scientific research into post-COVID. This allows the network to invite people in a targeted manner. For example, if research into a drug against brain fog is started, the network can then use the portal to directly ask the right people to participate.
Better diagnosis and treatment
Post-COVID experts by experience are happy that everyone can now register centrally for research. “Everyone knows someone who never recovered after corona. These people need a better diagnosis and treatment. This portal is an important step in that direction.”
The Post-COVID Network Netherlands was founded in early 2024 under the leadership of Leiden University Medical Center on behalf of the Ministry of Health, Welfare and Sport with a subsidy from ZonMw. In the network, patients, scientists, healthcare professionals and social partners work together to coordinate scientific research and patient care for people with post-COVID with and with each other. The network is a national partnership of, among others, (university) hospitals, patient organizations, paramedical partners and organizations such as RIVM, Nivel and C-support.
The Multi-year Long COVID study, which Erasmus MC is conducting on behalf of C-support, is not part of this project. The questionnaires and data are also not linked.
