People with long COVID asked to contribute to new Dutch research portal

The Dutch National Institute for Public Health and the Environment (RIVM) has launched a new research portal for people suffering long-term symptoms after being infected with coronavirus. People with long COVID can register via the portal to participate in scientific research. 

1,3 million people in the Netherlands suffer long COVID 

The portal is a result of a 32-million-euro investment by the Dutch government in research into the causes and treatment of long COVID . It aims to bring together doctors, scientists and patients to help deepen our understanding of long COVID (also known as post-COVID). 

Around 1,3 million people in the Netherlands have reported still experiencing symptoms three months after a coronavirus infection. The most common complaints include fatigue and brain fog, shortness of breath, muscle pain, and loss of taste and smell. Half have now recovered, but that leaves more than 500.000 people who are still suffering symptoms to a greater or lesser degree. There are currently no medicines or treatments that effectively eliminate the symptoms. 

Scientists believe long COVID can express itself in more than 200 different symptoms, with the exact effects different for each patient. It’s as yet unclear why some people suffer from long COVID , while others don’t. 

Portal will contribute to research into long COVID 

The portal should help researchers monitor exactly what symptoms people have, how often they are experiencing them, and how they change over time. Anyone with a long COVID diagnosis can register with the portal by filling out a questionnaire about their health, symptoms and medications. They will then be asked to fill out a shorter version of the same questionnaire every three months. In future, some patients may also be asked to contribute samples. 

Patients can also indicate via the portal whether they would like to participate in other scientific research into long COVID. According to the NIVM press release, this will help researchers find study subjects in a quick and targeted manner. For instance, if a trial into a drug to help brain fog starts, the portal can help researchers contact people with this specific symptom to invite them to take part. 

The portal is part of the Post-COVID Network Netherlands, which was established in early 2024 with the aim of coordinating scientific research and patient care for people suffering with long COVID. It brings together hospitals, patient organisations, paramedical partners and organisations such as the RIVM, Nivel and C-support.