Medulloblastoma

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ORPHA:616OMIM:155255C71.6
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20Active trials37Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Medulloblastoma is a malignant embryonal tumor of the cerebellum (posterior fossa) and is the most common malignant brain tumor in children. It arises from the cerebellum, which is located at the base of the brain and is responsible for coordination, balance, and motor control. Medulloblastoma is classified under ICD-10 as C71.6 (malignant neoplasm of the cerebellum). The tumor is highly aggressive and has a tendency to spread through the cerebrospinal fluid (CSF) to other parts of the central nervous system, a process known as leptomeningeal dissemination. Key symptoms include headaches, nausea and vomiting (particularly in the morning), problems with balance and coordination (ataxia), unsteady gait, visual disturbances such as double vision (diplopia), and signs of increased intracranial pressure including papilledema and hydrocephalus. In infants, an enlarging head circumference may be an early sign. As the tumor grows, it can obstruct the flow of cerebrospinal fluid, leading to obstructive hydrocephalus, which can cause lethargy, irritability, and cognitive changes. Medulloblastoma is now classified into four molecular subgroups: WNT-activated, SHH (Sonic Hedgehog)-activated, Group 3, and Group 4, each with distinct clinical behavior and prognosis. Some cases are associated with hereditary cancer predisposition syndromes, including Gorlin syndrome (PTCH1 mutations), Turcot syndrome (APC mutations), and Li-Fraumeni syndrome (TP53 mutations). Treatment typically involves a multimodal approach including maximal safe surgical resection, craniospinal irradiation (in children over 3 years of age), and adjuvant chemotherapy. Prognosis varies significantly by molecular subgroup, with WNT-activated tumors having the best outcomes (greater than 90% survival) and Group 3 tumors carrying a poorer prognosis. Current research is focused on risk-stratified therapy to reduce treatment-related toxicity in favorable-risk patients while intensifying therapy for high-risk groups.

Clinical phenotype terms— hover any for plain English:

MedulloblastomaHP:0002885Progressive macrocephalyHP:0004481Cerebellar medulloblastomaHP:0007129Cerebellar ataxia associated with quadrupedal gaitHP:0009878Abnormal brain FDG positron emission tomographyHP:0012658
Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

10 events
Jul 2026Comparison of Neurocognitive Outcome in Two Standard Regimen for Treatment of Low-risk Medulloblastoma

Nationwide Children's Hospital — PHASE3

TrialNOT YET RECRUITING
May 2026RNA-lipid Particle (RNA-LP) Vaccines for Recurrent/Progressive Medulloblastoma (MB)

University of Florida — PHASE1

TrialNOT YET RECRUITING
Mar 2026CSIMEMPHIS: Long-term Follow-up of Medulloblastoma Survivors That Received Craniospinal Irradiation

St. Jude Children's Research Hospital

TrialRECRUITING
Mar 2026Liothyronine in Combination With BIT Regimen for Medulloblastoma With or Without Minimal Residual Disease

Sabine Mueller, MD, PhD — PHASE1, PHASE2

TrialNOT YET RECRUITING
Jan 2026Digoxin Medulloblastoma Study

H. Lee Moffitt Cancer Center and Research Institute — PHASE2

TrialRECRUITING
Dec 2025Medulloblastoma Online Video-based Exercise Pilot Study

Aron Onerup — NA

TrialRECRUITING
Sep 2025Relapsed and Progressive Sonic Hedgehog Medulloblastoma With U1 Mutation Registry Study

Mohammad H. Abu Arja

TrialRECRUITING
Sep 2025Pilot Study of IT Topotecan and Maintenance Chemotherapy for HR-EBTs in Children < 6 Years, Post Consolidation

C17 Council — EARLY_PHASE1

TrialRECRUITING
May 2025Adoptive T Cell Therapy, DC Vaccines, and Hematopoietic Stem Cells Combined With Immune checkPOINT Blockade in Patients With Medulloblastoma

University of Florida — PHASE1

TrialACTIVE NOT RECRUITING
Feb 2025Systemic Biomarkers to Predict Radiation-Induced Neurocognitive Decline

Tata Memorial Centre

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Medulloblastoma.

20 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

20 recruitingView all trials with filters →
Phase 33 trials
A Study of Treatment for Medulloblastoma Using Sodium Thiosulfate to Reduce Hearing Loss
Phase 3
Actively Recruiting
PI: Ralph Salloum (Children's Oncology Group) · Sites: Birmingham, Alabama; Mobile, Alabama +101 more · Age: 421 yrs
Effect of Metformin on Behaviour and the Brain in Children Treated for a Brain Tumour
Phase 3
Actively Recruiting
PI: Donald Mabbott, Ph.D. (The Hospital for Sick Children) · Sites: New Lambton Heights, New South Wales; Westmead, New South Wales +18 more · Age: 721 yrs
Chemotherapy and Radiation Therapy in Treating Young Patients With Newly Diagnosed, Previously Untreated, High-Risk Medulloblastoma/PNET
Phase 3
Active
PI: Sarah E Leary (Children's Oncology Group) · Sites: Birmingham, Alabama; Birmingham, Alabama +183 more · Age: 322 yrs
Phase 26 trials
Apatinib Combined with Temozolomide and Etoposide Capsules in the Treatment of Recurrent Medulloblastoma in Children
Phase 2
Actively Recruiting
· Sites: Beijing · Age: 221 yrs
DFMO as Maintenance Therapy for Molecular High/Very High Risk and Relapsed Medulloblastoma
Phase 2
Actively Recruiting
PI: Michael A Huang, MD (Beat Childhood Cancer) · Sites: Little Rock, Arkansas; Oakland, California +21 more · Age: 021 yrs
Molecular and Clinical Risk-Directed Therapy for Infants and Young Children With Newly Diagnosed Medulloblastoma
Phase 2
Actively Recruiting
PI: Giles W. Robinson, MD (St. Jude Children's Research Hospital) · Sites: Palo Alto, California; Orlando, Florida +8 more
Reduced Craniospinal Radiation Therapy and Chemotherapy in Treating Younger Patients With Newly Diagnosed WNT-Driven Medulloblastoma
Phase 2
Active
PI: Nicholas J Gottardo (Children's Oncology Group) · Sites: Birmingham, Alabama; Mobile, Alabama +193 more · Age: 321 yrs
Digoxin Medulloblastoma Study
Phase 2
Actively Recruiting
PI: Laura Metrock, MD (University of Alabama at Birmingham Children's of ) · Sites: Birmingham, Alabama; Little Rock, Arkansas +13 more · Age: 030 yrs
A Clinical and Molecular Risk-Directed Therapy for Newly Diagnosed Medulloblastoma
Phase 2
Active
PI: Amar Gajjar, MD (St. Jude Children's Research Hospital) · Sites: Palo Alto, California; San Diego, California +21 more · Age: 339 yrs
Phase 12 trials
PEP-CMV in Recurrent MEdulloblastoma/Malignant Glioma
Phase 1
Active
PI: Daniel Landi, MD (Duke University) · Sites: Durham, North Carolina · Age: 335 yrs
Adoptive T Cell Therapy, DC Vaccines, and Hematopoietic Stem Cells Combined With Immune checkPOINT Blockade in Patients With Medulloblastoma
Phase 1
Active
PI: Duane Mitchell, MD, PhD (University of Florida) · Sites: Gainesville, Florida · Age: 430 yrs
N/A2 trials
Focal Radiotherapy Plus Low Dose Craniospinal Irradiation Followed by Adjuvant Chemotherapy in WNT Medulloblastoma.
N/A
Actively Recruiting
· Sites: Mumbai, Maharashtra · Age: 316 yrs
Medulloblastoma Online Video-based Exercise Pilot Study
N/A
Actively Recruiting
· Sites: München; Gothenburg · Age: 318 yrs
Other5 trials
Systemic Biomarkers to Predict Radiation-Induced Neurocognitive Decline
Actively Recruiting
· Sites: Mumbai, Maharashtra · Age: 539 yrs
CSIMEMPHIS: Long-term Follow-up of Medulloblastoma Survivors That Received Craniospinal Irradiation
Actively Recruiting
PI: Thomas E Merchant, DO, PhD (St. Jude Children's Research Hospital) · Sites: Memphis, Tennessee
Genetic and Molecular Risk Profiles of Pediatric Malignant Brain Tumors in China
Actively Recruiting
PI: Tao Jiang, MD (Beijing Tiantan Hospital) · Sites: Beijing, Beijing Municipality · Age: 018 yrs
Intraoperatively Observed Site of Origin and Growth Pattern of Medulloblastoma
Enrolling by Invitation
· Sites: Vienna, Vienna; Berlin +2 more
Relapsed and Progressive Sonic Hedgehog Medulloblastoma With U1 Mutation Registry Study
Actively Recruiting
PI: Murali Chintagumpala, MD (Baylor College of Medicine) · Sites: Houston, Texas · Age: 350 yrs

Specialists

Showing 25 of 37View all specialists →
JM
Jeff M Michalski
SAINT LOUIS, MO
Specialist
PI on 1 active trial7 Medulloblastoma publications
MM
Maryam Fouladi, MD
COLUMBUS, OH
Specialist
PI on 10 active trials
SP
Sabine Mueller, MD, PhD
Birmingham, Alabama
Specialist

Rare Disease Specialist

PI on 9 active trials
SL
Sarah E Leary
SEATTLE, WA
Specialist
PI on 2 active trials4 Medulloblastoma publications
FD
Francois Doz, Prof. Dr.
Specialist
PI on 1 active trial
MI
Meredith S Irwin
CINCINNATI, OH
Specialist
PI on 1 active trial
TM
Till Milde, Dr. med.
Specialist
PI on 1 active trial1 Medulloblastoma publication
SM
Sabine Mueller, MD, PhD, MAS
SAN FRANCISCO, CA
Specialist
PI on 8 active trials
RM
Rajen Mody
ANN ARBOR, MI
Specialist
PI on 2 active trials
JM
Jana Portnow, MD
DUARTE, CA
Specialist
PI on 3 active trials
AM
Anna Pawlowska, MD
DUARTE, CA
Specialist
PI on 3 active trials
TM
Tobey MacDonald, MD
WASHINGTON, DC
Specialist
PI on 3 active trials
MP
M. Sue O' Dorisio, MD, PhD
Specialist
PI on 1 active trial
AG
Amar Gajjar
MEMPHIS, TN
Specialist
PI on 4 active trials4 Medulloblastoma publications
MM
Muna Qayed, MD
ATLANTA, GA
Specialist
PI on 2 active trials
AO
Antonio Omuro
STANFORD, CA
Specialist
PI on 1 active trial
RM
Roger J. Packer, MD
WASHINGTON, DC
Specialist
PI on 5 active trials
FM
Frank Deinlein, MD
Specialist
PI on 1 active trial
RA
Reham Alsakhawi
Specialist
PI on 1 active trial
MM
Mahmoud Usama Mahmoud Ahmed, MSc
Specialist
PI on 1 active trial2 Medulloblastoma publications
YT
Yongji Tian
Specialist
PI on 1 active trial
DA
David Ashley
Specialist
PI on 2 active trials

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Medulloblastoma.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Medulloblastoma

1 articles
ResearchCLINICALTRIALSMar 26, 2026
Trial Completed: Rare CNS Tumors Outcomes &Risk (NCT03251989)
Researchers at the National Cancer Institute completed a study of 326 people with rare brain and spine tumors, including meningioma, ependymoma, medulloblastoma
See all news about Medulloblastoma

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Medulloblastoma

What is Medulloblastoma?

Medulloblastoma is a malignant embryonal tumor of the cerebellum (posterior fossa) and is the most common malignant brain tumor in children. It arises from the cerebellum, which is located at the base of the brain and is responsible for coordination, balance, and motor control. Medulloblastoma is classified under ICD-10 as C71.6 (malignant neoplasm of the cerebellum). The tumor is highly aggressive and has a tendency to spread through the cerebrospinal fluid (CSF) to other parts of the central nervous system, a process known as leptomeningeal dissemination. Key symptoms include headaches, nau

At what age does Medulloblastoma typically begin?

Typical onset of Medulloblastoma is childhood. Age of onset can vary across affected individuals.

Are there clinical trials for Medulloblastoma?

Yes — 20 recruiting clinical trials are currently listed for Medulloblastoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Medulloblastoma?

25 specialists and care centers treating Medulloblastoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.