Generously funded by Donors of Brain Tumour Foundation of Canada

Hallie Coltin – The Centre Hospitalier Universitaire Sainte-Justine

Project Title: “Long-term outcomes of Pediatric Low-Grade Glioma Survivors: A Molecularly-Informed, Population-Based Approach”

Description of Project:

Pediatric low-grade gliomas (PLGG) are the most common brain and spinal cord tumours in children. Even though PLGG are non-cancerous tumours with high survival rates, we think the majority of survivors suffer from severe and irreversible health complications (for example, seizures and strokes). These complications put survivors at risk of poor health and quality of life. We do not know how often these severe events occur; we also do not know whether different types of PLGG tumours are linked to different levels of risk later on. In this novel study, we will identify all Ontario PLGG survivors diagnosed over the past 30 years (approximately 1,400 survivors). We will correlate the survivors’ tumour types with their public health records to determine how often survivors develop these adverse events (death, needing hospital care, hormone problems, seizures, strokes, needing a hearing aid, vision problems, additional tumours, infertility, poor mental health, disability). Lastly, we will compare the risk of these adverse events between PLGG survivors and healthy Ontario residents. By knowing how often these events occur and which survivors are at highest risk, we will be able to provide better medical and psychosocial care to PLGG survivors and learn how to prevent these complications.

What receiving this award means:

“I would like to thank the Brain Tumour Foundation of Canada for supporting this important work. Our project represents a novel collaboration between experts in translational medicine, clinical epidemiology, and neuro-oncology survivorship. Our comprehensive analysis will allow us to better understand the health challenges faced by survivors of pediatric low-grade glioma. This funding is critical to improving care for survivors, advocating for social supports, and designing future interventions to optimize their long-term health.”

Final Report | October 2026

Pediatric low-grade gliomas (pLGGs) are the most common type of brain tumour in children. Advances in treatment have led to excellent survival rates, but less is known about the long-term health challenges faced by survivors.

In this study, researchers followed 1,415 children and adolescents in Ontario, Canada, who survived at least five years after being diagnosed with a pLGG. Their health outcomes were compared with those of more than 7,000 individuals of the same age, sex, and geographic region who had not had cancer. Researchers followed participants for a median of 13 years after diagnosis.

This study found excellent long-term survival. Twenty years after diagnosis, almost 96% of survivors were still alive. However, survivors experienced higher rates of important health problems than people without a history of cancer. They were more likely to have a stroke, experience other health complications, require disability support, visit emergency departments, and be hospitalized.

Importantly, most children in this study did not receive radiation therapy, a treatment often associated with long-term side effects. Despite this, survivors still faced a significant burden of health complications.

These findings highlight the need for lifelong follow-up care for survivors of pediatric low-grade glioma. They also underscore the importance of developing less toxic treatments, preventing long-term complications, and providing comprehensive survivorship care to help survivors achieve the best possible health and quality of life throughout adulthood.