6.           HGG Project – Project on Pediatric Brain Tumors/Infant Brain Tumors

International Registry of High-Grade Gliomas in Children/Infants

The CANSEARCH research platform is highly interested in identifying under-studied research areas. Due to their rarity, pediatric cancers fall into this category, particularly high-grade pediatric gliomas (HGG). This pathology is even rarer in young children under the age of 3. Therefore, the creation of an international registry for infantile HGGs appears to be crucial. The aim of the project is to systematically collect epidemiological, clinical, and molecular data from young children with HGGs to significantly improve knowledge about infantile HGGs.

To rapidly increase knowledge, we conducted a retrospective study of available data from patients with infantile hemispheric gliomas. Our retrospective study, titled “Meta-analysis of individual patient data on infantile hemispheric gliomas (IHG)”, examined the characteristics of infantile hemispheric gliomas (IHG), a particular form of pediatric brain tumor characterized by specific genetic mutations. We analyzed data from over 150 IHG patients – the largest study on this disease – and found that despite generally favorable survival, these patients often experience early disease progression, highlighting the need to define optimal treatment. Complete resection surgery appears to play a crucial role in initial treatment, while further evaluation of salvage therapeutic options is needed to understand their impact on overall survival, and this analysis is ongoing.

Another limitation of these retrospective data is their incompleteness, making interpretations difficult and highlighting the need for a registry that collects well-documented patient data to draw informed conclusions.