The aim of the study is to determine whether this treatment for the long-term effects of concussion works, and whether it warrants follow-up research. Dutch healthcare insurers are not convinced about the effect of this American treatment. The Dutch Brain Foundation has awarded a grant of €200,000 for the study.
In 2019, some 89,000 people consulted their GP after suffering from concussion. Ten to 30 percent of these people suffered serious long-term effects. The symptoms are largely invisible and vary from headaches, dizziness, nausea and sensitivity to stimuli to impaired concentration and memory loss. The day-to-day lives of those concerned can be so severely affected that every year, hundreds of patients turn to the expensive Cognitive FX treatment as a last resort. In some cases, the costs can run up to €15,000 per treatment. Insurance companies do not reimburse the cost of this treatment because there is no independent evidence regarding its effectiveness.
Although many of the Dutch patients who travel to the US for this treatment report positive experiences, scientific evidence about its effectiveness is still very limited. The researchers now want to study the effect in a pilot study. UMCG researcher Rimke Groenewold is involved in the pilot. ‘We want to understand the much-discussed CFX treatment and learn more about the factors that possibly make it work. We also want to make a proper analysis of the effects described by patients who have been treated. It’s time that Dutch healthcare insurers and patients were given independent information.’
The researchers intend to make a thorough, structured analysis of the CFX treatment and the possible working mechanisms. There is currently no clear information about precisely what happens during treatment. They will also monitor new patients before, during and after the treatment by asking them how they feel, which symptoms they have at set measuring moments and by checking their performance in various tests. Their brain scans will be studied and the researchers will try to find differences between the patients. If they establish positive effects in people who have undergone the treatment, more research can be conducted into its effectiveness to decide whether the treatment should be offered in the Netherlands.
The study is being carried out by Amsterdam UMC in collaboration with the UMCG and a group of Dutch experts, doctors, lay experts and patient organizations. Rimke Groenewold expects the first results to be published in 2023. She stresses that the research is very important to people suffering the long-term effects of concussion.
Attention for the invisible consequences
Brain damage caused by concussion or a brain contusion, for example, can have serious consequences for the brain and lead to symptoms that continue for months or even years. Some people never fully recover and experience life-changing problems. To draw attention to these invisible effects, Brain Awareness Week from 15 to 21 March has been dedicated to this problem. Activities (mainly online activities) have been organized to inform people about what this problem entails and how to deal with it, and to highlight initiatives that have been launched in the Netherlands to help the people concerned.
About the Dutch Brain Foundation
One in four every people has a brain disorder. Brain disorders are set to become the number one illness in the Netherlands. This has to stop. A brain disorder turns your life upside-down. Sooner or later, it will affect each and every one of us. This is why the Dutch Brain Foundation is doing its utmost to ensure that we can all rely on having a healthy brain – both now and in the future. Rather than focusing on just one disorder, we spread our investments to find ground-breaking solutions that will help to prevent, halt or cure brain disorders. Our work includes commissioning research, providing information and helping to achieve better patient care, rehabilitation and participation. For more information, visit: www.hersenstichting.nl.