High-grade brain tumor registration

Structured and collaborative data collection is key to improving outcomes for children with brain tumors. By leading international registries and retrospective studies, the Van Vuurden lab aims to create robust datasets that enable better insights into treatment response, prognostic markers, and survival outcomes.

In addition to drug delivery studies, Dr. Dannis van Vuurden established and leads the SIOPE DIPG/DMG Registry (funded by the DIPG/DMG Collaborative) from the Máxima Center. The SIOPE DIPG/DMG Registry allows for the collection of data of real life DIPG/DMG patients (e.g. both trial and non-trial patients) in a collaborative and structured way from a multitude of European and non-European institutes.

The registry enables reliable, matched-pair analyses for single arm studies to provide an alternative to randomized studies. It allows for the analysis of data concerning baseline characteristics, clinical presentation, radiological characteristics, tumor biology and response, to create international consensus on criteria used in clinical trials, and to retro- and prospectively ascertain clinical and biological parameters that are predictors of therapy response.

In retrospect we might even be able to (better) differentiate successful from less successful treatment options. Epidemiological studies on data from the registry are ongoing (PhD student Josh Baugh), as well as studies on automated control of regulatory documents (PhD student Milen Kebede).

Retrospective review

To explore the relationship of tumor characteristics, diagnostics and treatment regimens to survival outcomes of children with high-grade brain tumors in the Netherlands in the last 30 years, PhD student Raoull Hoogendijk is conducting an extensive retrospective review of clinical, pathology and radiology data.

This research is a collaboration with the Kremer and Karim-Kos research groups at The Máxima. This study will gain a better understanding of the relationship between changes in tumor characteristics, diagnostics and treatment regimens with survival outcomes of high-grade brain tumors. Furthermore, we intend to define better prognostic markers for treatment response and overall survival.

Notably, to date, no other nation-wide study has used such an integrative approach to study the associations of these variables with survival outcomes.