Abstract
Pediatric central nervous system (CNS) tumors are the most common solid tumors in children and among the deadliest cancers in childhood. This thesis investigates the survival outcomes of children diagnosed with a CNS tumor and explores ways to enhance the clinical relevance of population-based data.
The Past
Using data from the Netherlands Cancer Registry (NCR) for the period 1990–2017, our research found improved five-year survival rates for malignant CNS tumors over time, though there were periods of decline due to changes in diagnostic and registration practices. Comparing data with Belgium highlighted how differences in CNS tumor registration impact survival statistics. These challenges in tumor registration were further explored in the context of international tumor classification systems and current coding practices. We found that differences in availability of diagnostic tools and registration practices significantly affects data accuracy and international comparability of incidence and survival outcomes.
The Future
To address these challenges, we developed a protocol to improve data quality and relevance of reported outcomes. By using the NCR data and implementing this protocol we reported significant sex survival differences in pediatric high-grade gliomas. Due to the implementation of our protocol we were able to pinpoint this survival difference to high-grade midline gliomas, one of the most aggressive CNS tumor types in children. Further research is needed to unravel the underlying mechanisms contributing to this difference. In another study, we analyzed over 15,000 European cases to understand survival patterns and disparities, we again implemented our protocol which enhanced clinical relevance and led to more accurate information to inform stakeholders.
In summary, this thesis emphasizes the importance of accurate tumor classification, coding, and integration of cancer registry data to inform research, clinical practices, and policymaking.
The Past
Using data from the Netherlands Cancer Registry (NCR) for the period 1990–2017, our research found improved five-year survival rates for malignant CNS tumors over time, though there were periods of decline due to changes in diagnostic and registration practices. Comparing data with Belgium highlighted how differences in CNS tumor registration impact survival statistics. These challenges in tumor registration were further explored in the context of international tumor classification systems and current coding practices. We found that differences in availability of diagnostic tools and registration practices significantly affects data accuracy and international comparability of incidence and survival outcomes.
The Future
To address these challenges, we developed a protocol to improve data quality and relevance of reported outcomes. By using the NCR data and implementing this protocol we reported significant sex survival differences in pediatric high-grade gliomas. Due to the implementation of our protocol we were able to pinpoint this survival difference to high-grade midline gliomas, one of the most aggressive CNS tumor types in children. Further research is needed to unravel the underlying mechanisms contributing to this difference. In another study, we analyzed over 15,000 European cases to understand survival patterns and disparities, we again implemented our protocol which enhanced clinical relevance and led to more accurate information to inform stakeholders.
In summary, this thesis emphasizes the importance of accurate tumor classification, coding, and integration of cancer registry data to inform research, clinical practices, and policymaking.
| Original language | English |
|---|---|
| Awarding Institution |
|
| Supervisors/Advisors |
|
| Award date | 2 Apr 2025 |
| Publisher | |
| Print ISBNs | 978-94-6522-008-6 |
| DOIs | |
| Publication status | Published - 2 Apr 2025 |
Keywords
- Epidemiology
- Brain tumors
- Pediatrics
- Survival
- Incidence