Veer(le)kracht

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.

ONC201

The administering of the ONC201 drug is currently being investigated in the DMG-ACT programme. The clinical results are “cautiously positive”. It is therefore the intention to use the ONC201 drug in the first Dutch trial, in combination with drugs that have shown promising results in preclinical research, such as Paxalisib.

Starting budget first trial and follow-up studies

The costs for starting and executing the first trial amount to a minimum of € 200,000, which the Princess Máxima Center cannot finance from existing healthcare budgets. Raising this amount was the first concrete goal of the Veer(le)kracht Foundation so that the research/trial can hopefully start in the autumn of 2022. Thanks to the many generous donations and fundraising campaigns, that goal was achieved within a month!

But much more money is needed as new studies and trials are, and will continue to be desperately needed in order to improve the treatment of children with a DMG. The Princess Máxima Center is fully engaged in new research and associated trials. The next possible and most advanced trial is a combination therapy, in which the drug ONC201 and a (so-called) oncolytic virus is injected directly into the tumor. The Princess Máxima Center will play an important role in the further development and rollout within the PNOC network. Of course, this again involves great costs, but it will bring better treatment of children with a DMG a little closer.

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. In this way, Veerle's wish to help other children with a DMG in the future can also be fulfilled. 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.

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