The Goal: Dutch trial(s) and more research into DMGs
Prinses Máxima Center and DMG-ACT
The Princess Máxima Center has recently – as the first hospital in the EU – joined a prestigious international consortium in the field of research into childhood brain cancer; the Pediatric Neuro-Oncology Consortium (PNOC).
This consortium has started the DMG-Adaptive and Combinatorial Trial (DMG-ACT) program. Within this program eight research laboratories in various countries are working together on new research and treatment methods for DMGs. They have developed a joint platform with which they can exchange and validate research results much faster and much more efficient. The type of research varies from laboratory research and animal studies, to actual medical trials (a "trial" is where doctors investigate the effect and results of a possible new treatment with actual patients). The final trials will be rolled out in many more treatment centers.
Unique
Children in the Netherlands (and the rest of Europe) until now have had very limited access to trials in the field of DMGs. Through their affiliation with the PNOC and access to the DMG-ACT program, the Princess Máxima Center can change this situation.
Moreover, the concept of the trials within the DMG-ACT program is unique, because they are suitable for children with a DMG in any phase of their disease. Both for children with a newly diagnosed DMG, and for children who have completed radiation therapy and whose disease has returned. All these children are potentially eligible. This is in contrast to many other trials in which the disease must either be in a more advanced stage or where children cannot have or have yet to have radiotherapy.
Trial ONC201 has launched
Within the DMG-ACT program, treatment with the drug ONC201 is currently being examined. Because of the efforts of (amongst others) the Veer(le)kracht Foundation - who managed to raise the amount required to start the trial (EUR 200.000,-) in a very short time - dr. Jasper van der Lught of the PMC has opened this first trial in November 2022. The first 20 children with a DMG have meanwhile been receiving treatment with ONC201 as part of this trial. In the coming months, we expect the trial to further broaden. With the launch of this first trial, the first concrete goal of the Veer(le)kracht Foundation has been achieved, and of course all thanks to the many generous donations and fantastic campaigns.
Subsequent research
But a lot more money is needed, because further, new research and trials remain essential to improve the chances for children with a DMG. The PMC is hard at work to further develop new research and corresponding trials.
That is why the Veer(le)kracht Foundation continues to support the Princess Máxima Center by raising money to finance the all-important studies into the treatment of children with a DMG. And this is all powered by Veerle, whose biggest wish it is to also help other children with a DMG to get a better outlook. How great would it be if effective treatments for children with a DMG were eventually found in the Netherlands, partly thanks to the Veer(le)kracht Foundation.