New network brings coherence to post-COVID research

‘Hopefully, we’ll soon be able to give as many people as possible the best treatment based on the latest insights.’

An estimated 90,000 people in the Netherlands are severely limited by post-COVID. An effective treatment is still lacking. Scientists are therefore studying the condition itself, exploring new treatments and determining the best way to organise patient care. Until now, these studies and care have been fragmented. ‘This has made it difficult to move forward together,’ says professor Anske van der Bom (project leader of the Post-COVID Network Netherlands). ‘As post-COVID is a new condition, there are no appropriate standards for it. As a result, researchers and health professionals carry out measurements in different ways.’ The Ministry of Health, Welfare and Sport has released €9 million to better organise Dutch post-COVID research and care for post-COVID patients through the Post-COVID Network Netherlands. ‘We want to agree on who does what and in what way. We also want to pool all existing knowledge,’ explains Van der Bom.

The network currently has 38 partners, including many university medical centres and other hospitals, paramedical partners and organisations such as PostCovidNL and C-support. ‘We divided the research into seven work packages, with four overarching platforms that are involved in all work packages,’ says Van der Bom. ‘ZonMw invited everyone to two workshops in September and October to develop the plans in detail. These were impressive meetings. About 100 people, from doctors to patients, attended to discuss and align on our goals and responsibilities. They were tough discussions, but we came up with a great plan. The network should be up and running in three years.’ The network grant will be followed by additional rounds of funding for specific research projects. 

Van der Bom gives us a quick overview of all the work packages in the network. ‘The Biobank work package focuses on collecting biomaterials from patients, such as blood. Researchers will also need to visit patients to collect these biomaterials, as the most severely affected individuals cannot easily travel to the research site. Yet their biomaterials are particularly valuable to us.’ A well-equipped biobank with patient material accessible to all researchers could accelerate the research process.

The Cohort/Real World Data work package aims to bring together everyone in the Netherlands who has been diagnosed with post-COVID in a single online portal. ‘We also want to document whether these patients want to participate in scientific research, and if so, in what kind of research.’ This kind of a registry has great advantages. ‘Imagine we want to launch a study on a specific drug and need 100 people who are suffering from brain fog, a symptom not all post-COVID patients have. Such a portal would allow us to identify suitable patients quickly. We also know that many patients are eager to take part in trials in the hope that it may lead to improvement.’ Data from both new and old studies will be stored in a secure and structured way, so that valuable data is not left to gather dust somewhere. 

Another work package, Translational research, deals with translating findings from the lab to the clinic and vice versa. Van der Bom gives an example. ‘Imagine you discover in the lab that an immunological process might be disturbed in post-COVID-patients. To translate this finding to clinical practice, you could test patients’ blood to observe what happens when you try to influence this immunological process. Conversely, you can also bring notable clinical findings back to the laboratory. For example, you may notice that some patients get post-COVID after each new COVID-19 infection and remain ill for months. You could then return to the lab to investigate possible explanations, such as a genetic factor.’

A fourth work package focuses on setting up a platform study. ‘A platform study is an efficient way of conducting patient trials for new drugs,’ explains Van der Bom. ‘Traditionally, drugs are tested by dividing people into groups, one of whom receives the new drug. It’s only once you have enough people in both groups that you can start comparing them. This usually takes a long time. And if another new drug is found in the meantime, you have to wait until your trial is finished before you can start testing it. A platform study is much more flexible. For example, you can add other interesting drugs into the mix thanks to the adjusted statistics. You can also stop a drug relatively quickly if the results are disappointing, or scale it up if something is promising,’ says Van der Bom. While setting up a platform study is more labour-intensive, once it is up and running, it saves a lot of aggravation. ‘You don’t have to write a new protocol every time and rethink the endpoints and so on,’ says Van der Bom. Which drugs are tested in the platform study is determined by the Post-COVID Network Netherlands in collaboration with international partners.

A fifth work package revolves around the Pathophysiology, or the pathogenic mechanism behind post-COVID. ‘For example, what exactly is going on in people who are extremely tired? What about the energy factories in their cells and muscles? Or what’s happing in the lungs of people suffering from shortness of breath?’ The researchers in the Pathophysiology work package will also use biomaterials from the Biobank work package. ‘For example, to determine whether blood clotting is disrupted in people with post-COVID.’

A final work package deals with Implementation: how do you get existing and new knowledge into clinical practice? ‘We obviously want healthcare professionals to learn about better treatments and apply them in their own practice,’ says Van der Bom. ‘Therefore, we actively disseminate this knowledge to professionals and patients.’ Recently, the Ministry of Health, Welfare and Sport provided €27 million to set up special post-COVID clinics. ‘We also work closely with these polyclinics,’ says Van der Bom. ‘This is where it makes sense to align care and research. We want to learn from every patient that’s treated: what is working and will it be useful to others?’ The professor gives an example. ‘A certain type of antidepressant seems to work for people with a specific pattern of symptoms. Hence, some doctors are already prescribing it to their patients, but no one is systematically keeping track of for whom it works for and whom it doesn’t. We are keen to take on that task.’

In addition to the six work packages mentioned above, and the one umbrella work package for management, there are four platforms that are relevant to all work packages. The first is the Methodology platform, which ensures that everyone is using appropriate research methods. ‘This includes research design, statistical analysis and interpretation of results,’ says Van der Bom. The second platform revolves around experts by experience. ‘Two experts by experience – patients with post-COVID – are assigned to each work package, actively contributing their insights from the very start. Both the experts by experience and the scientists attend courses to learn how to work together professionally and as equals. The partnership with the experts by experience is already proving to be highly productive. I’m really pleased with it.’ The third work package, Ethics, considers ethical aspects in all work packages. ‘For example, research with children, which is often more challenging ethically speaking, but very important. After all, many children have post-COVID as well.’ The last platform, Dissemination, is about disseminating knowledge and training professionals. ‘We’ve found that many healthcare professionals aren’t aware yet of existing treatments that can relieve symptoms, or are still prescribing treatments that can actually be harmful. The Dissemination platform will ensure that all knowledge from the different work packages is properly disseminated and applied.’

Van der Bom is proud of the momentum generated by the network. ‘Things are moving quickly, partly thanks to the tremendous pressure from all those people who really want to find a solution to this major problem,’ she says. ‘We don’t expect our network to find the solution for post-COVID in the short term. But we hope that we’ll soon be able to give as many people as possible the best treatment based on the latest insights, so we can improve their lives a little. It’s much better for patients when a doctor says: “We can’t cure you, but there are a couple of things we can do to improve certain aspects.” Life is much more bearable in such cases than when a doctor says: “We can’t find anything; just go home.” Understanding and recognition are very important, and this also applies to other post-infectious diseases such as Pfeiffer’s, Q fever, ME and Lyme. I hope that the focus on post-COVID will help to provide these patients with more recognition and understanding as well.’

* Following the responses to the other post-infectious diseases mentioned in the above article, Anske van der Bom would like to stress that ME should also be included in this list. It has now been added here.

Interested in learning more about the Post-COVID Network Netherlands? 
Send an email to PostCOVIDNetwerkNL-INFO@lumc.nl