High-Grade Glioma:

A Comprehensive Guide

For Pediatric Cancer

High-Grade Glioma:

A Comprehensive Guide

For Pediatric


High-Grade Glioma:

A Comprehensive

Guide For

Pediatric Cancer

What is Pediatric High-Grade Glioma?

Pediatric High-Grade Glioma (pHGG) represents a formidable challenge in pediatric oncology. These aggressive brain tumors arise from glial cells in the central nervous system and are known for their fast-growing nature and ability to infiltrate nearby brain tissue. Pediatric high-grade brain tumors can be found almost anywhere within the Central Nervous System; however, they are found most within the upper part of the brain. Although pHGG is relatively rare, accounting for only a small percentage of pediatric brain tumors, it can devastate a child’s health and well-being. This guide will discuss various aspects of pHGG, including background on the disease, diagnosis, and treatment options. Our goal is to empower you with knowledge, foster hope, and guide you through this challenging journey of Pediatric High-Grade Glioma.

How Common are Pediatric High-Grade Gliomas?

  • The incidence of pHGGs has been calculated as 1.1–1.78 per 100,000 children.
  • Despite their low incidence, pHGGs are responsible for over 40% of all childhood brain tumor death, and overall, they are the more common cause of tumor-related death for children.
  • The highest incidence of these tumors in pediatrics appears to occur in children aged 15 to 19 years.

What is the Prognosis for Pediatric High-Grade Glioma?


  • There is a 3-year progression-free survival of about 11%.
  • The five-year survival rate for high-grade gliomas in children is less than 20% and depends on individual prognosis.

What are the Symptoms of Pediatric High-Grade Glioma?


  • Common symptoms include persistent headaches, seizures, vomiting, changes in vision, and difficulty with balance or coordination.
  • It is important to note that these symptoms can vary depending on the location and size of the tumor.


Pediatric high-grade gliomas encompass a group of malignant brain tumors characterized by their rapid growth and infiltrative nature. Unlike their adult counterparts, these tumors tend to exhibit distinct molecular features, emphasizing the need for specialized approaches in diagnosis and treatment.

Typically, diagnosing pHGG involves a combination of imaging tests, such as MRI or CT scans, and a biopsy to confirm the presence of cancerous cells.

A thorough evaluation is essential, typically involving several diagnostic tools:

Clinical Presentation: pHGG often presents with nonspecific symptoms, making early diagnosis challenging. Symptoms may include persistent headaches, seizures, and neurological deficits, requiring vigilant observation by parents and healthcare providers.

Diagnostic Imaging: Advanced imaging techniques, such as Magnetic Resonance Imaging (MRI) and Computed Tomography (CT) scans, play a pivotal role in visualizing the tumor’s location, size, and characteristics. These images are instrumental in treatment planning.

Biopsy and Molecular Testing: Confirming the diagnosis involves a biopsy, wherein a small sample of the tumor is extracted for analysis. Molecular testing is becoming increasingly crucial, offering insights into specific genetic mutations that guide treatment decisions. Understanding the molecular profile can also contribute to prognosis assessment.

Treatment Options for Pediatric High-Grade Glioma

Treating Pediatric High-Grade Glioma requires a multidisciplinary approach involving a team of oncologists, neurosurgeons, radiation therapists, and other specialists. The treatment plan will depend on various factors, including the subtype of pHGG, the tumor’s location and size, and the child’s overall health.

The patient’s physician may consider one or more treatment options:

Surgery: Surgical intervention aims to remove as much of the tumor as possible without compromising critical brain functions. The challenges lie in the delicate nature of pediatric brain surgery, with precision and minimizing damage to surrounding healthy tissue being paramount.

Radiation Therapy: Radiation therapy is a standard pHGG treatment. While effective, it poses challenges in pediatric cases due to the developing nature of the brain. Advances in targeted radiation delivery seek to minimize adverse effects while maximizing therapeutic impact.

Chemotherapy: Various chemotherapy regimens, often combined with radiation therapy, are employed to target cancer cells and impede their growth. The choice of chemotherapy depends on the tumor type and the individual patient’s response.

Targeted Therapies: Emerging targeted therapies aim to exploit specific molecular vulnerabilities within the tumor cells. These therapies represent a promising frontier, with ongoing clinical trials exploring their efficacy in pediatric gliomas.

Clinical Trials: In some cases, participation in clinical trials may offer promising experimental treatments that are not yet widely available. This option can be appropriate for any stage of cancer, depending on ongoing trials, rather than seen as a last resort. It is essential to research and talk to your healthcare provider about all clinical trial options that you may qualify for. 

Financial Resources

Support Networks

Glenn Garcelon Foundation

The Glenn Garcelon Foundation is a 501(c)(3) non-profit organization which exists to improve the quality of life of brain tumor survivors, caregivers and their families by providing emotional and financial support.

Website: https://www.glenngarcelonfoundation.org/

Phone: 503-969-7651

Family Reach

Financial assistance to individuals undergoing cancer treatment. A child or young adult must be impacted. They can provide assistance to families with a child facing cancer (aged 0 to 17), young adult patients (aged 18 to 30) with or without children in the home, and adult patients (31 and older) who have children aged 18 and under.

Website: https://familyreach.org/ftp/

Phone: 973-394-1411

WINKS- Empathy in Action

The Empathy in Action Grant Program provides financial assistance to brain tumor patients and caregivers with demonstrated financial need in accordance with WINKS’ charitable purposes. Patients and caregivers whose annual household income is less than 300% of the Federal Poverty Guidelines are eligible for assistance under this program.

Website: https://winksbt.org/empathy-in-action#62e97dd7-74cd-4855-9424-8efcdb4d0432

Partners in Care

Grant to assist with temporary lodging, transportation, food. Must be within 6 months of a cancer diagnosis. Must reside or receive treatment in Alabama, Arkansas, California, Florida, Indiana, Kentucky, Massachusetts, Missouri, Nevada, North Carolina, Oklahoma, Rhode Island, South Carolina, Texas, Washington, and West Virginia.

Website: https://www.yourpartnersincare.org/apply/

Phone: 888-850-1622

Bringing Hope Home

Financial assistance with one time grant for household expenses. Must live in specific areas in PA, NJ, NY and Maryland. See website for detailed info on locations. For patients on active cancer treatment.

Website: https://bringinghopehome.org/

Phone: 484-580-8395

Allyson Whitney Foundation

Our ‘Life Interrupted Grants’™ cover a wide range of needs, including (but not limited to): current and residual medical bills, rent, utilities, car and health insurance premiums, IVF treatments, integrative therapies, travel expenses, and medical hair pieces. If you think that you might be an ideal candidate for the grant, contact your patient navigator to request an application during our open request period.

Website: https://allysonwhitney.org/grants/

Email: grants@allysonwhitney.org

Mission 4 Maureen

Help provide financial assistance to brain tumor patients, burdened by the staggering cost of treatment.

Website: https://mission4maureen.org/

Phone: 440-840-6497

The American Brain Tumor Association

The American Brain Tumor Association is the nation’s oldest nonprofit organization dedicated to brain tumor education, support and research. In 1973, the ABTA was founded by two mothers determined to find answers that, at the time, were not yet available. Since then, the ABTA has funded more than $34 million in brain tumor research and now reaches a national audience, providing educational and support resources.

Website: abta.org

Phone: 773-577-8750

National Brain Tumor Society

National Brain Tumor Society (NBTS) unrelentingly invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and caregivers.

Website: braintumor.org

Phone: 617.924.9997

End Brain Cancer Initiative

EBCI is a steadfast advocate on behalf of the brain tumor community in the United States & beyond. We are here to help patients, caregivers, and their loved ones as they navigate the complicated path of the brain tumor journey.

Website: endbraincancer.org

Phone: (425) 444-2215


The Musella Foundation for Brain Tumor Research & Information, Inc. is a 501(c)(3) nonprofit public charity devoted to empowering brain tumor patients and their families.

Website: virtualtrials.org/musella.cfm

Phone: 888-295-4740

Pediatric Cancer Research Foundation

Since 1982, the Pediatric Cancer Research Foundation (PCRF) has been chasing one ambitious goal: to make it possible for all children facing childhood cancer to beat their disease and realize their full potential. We will achieve this by powering cures where none exist and giving rise to less toxic regimens that have fewer side effects.

Website: pcrf-kids.org

Phone: 800.354.7273

American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) was founded in 1970 by parents of children diagnosed with cancer. Formerly known as Candlelighters, ACCO is the nation’s oldest and largest grassroots organization dedicated to childhood cancer.

Website: www.acco.org

Pediatric Brain Tumor Consortium

The Pediatric Brain Tumor Consortium (PBTC) was formed by the National Cancer Institute (NCI) in 1999 to improve the treatment of primary brain tumors in children. The participating academic centers and children’s hospitals are responsible for the diagnosis and treatment of a large percentage of children with primary brain tumors in the United States and Canada.

Website: pbtc.org

Children’s Brain Tumor Foundation

The Children’s Brain Tumor Foundation (CBTF) was founded in 1988 by a group of dedicated parents, physicians, and friends to improve the treatment, quality of life, and the long term outlook for children with brain and spinal cord tumors through research support, education, and advocacy to families and survivors.

Website: cbtf.org

Phone: 212-448-9494

Pediatric Brain Tumor Foundation

The Pediatric Brain Tumor Foundation® (PBTF, EIN/Tax Identification Number: 58-1966822) is committed to leading the way toward a future without childhood cancer.

Website: curethekids.org

The Children’s Brain Tumor Network

The Children’s Brain Tumor Network is dedicated to driving innovative discovery, pioneering new treatments and accelerating open science to improve health for all children and young adults diagnosed with a brain tumor.

Website: cbtn.org


Pediatric High-Grade Glioma is a challenging diagnosis for any parent to face. However, with advances in medical research and comprehensive treatment approaches, there is hope for improved outcomes and quality of life for children with pHGG. Seek out reputable resources, consult medical experts, and consider joining support groups to connect with other families. Remember to take care of yourself along the way, as your well-being is vital for providing the best possible support for your child.

If a loved one has been diagnosed with Pediatric High-Grade Glioma, it’s crucial to discuss all treatment options with your healthcare provider. If you have additional questions, you can contact our team.

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