Registry for rare brain tumors in children and young adults
Official title: International Rare Brain Tumor Registry
Run by Children's National Research Institute · NCT05697874 · Data updated 2026-11-12
This study is collecting samples and health information from children and young adults with rare brain tumors to learn more about these conditions and improve treatment over the next 10 years.
Quick facts
| Study type | Observational |
|---|---|
| Ages | Any age to 45 Years |
| Sex | All |
| Enrollment | 5800 (estimated) |
| Sponsor | Children's National Research Institute Academic / other |
| Locations | 13 sites (Los Angeles, California and 12 other locations) |
| Status | Recruiting |
| Started | January 1, 2023 |
| Main results expected | December 2033 |
| Study ends | December 2033 |
| Registry record updated | August 7, 2026 |
| Trial ID | NCT05697874 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include children, adolescents, and young adults with known or suspected rare brain tumors such as CNS sarcoma or BCOR-altered tumors.
✕Probably not a fit
Patients over 46 years of age or those with extra-CNS primary tumors will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The International Rare Brain Tumor Registry aims to enhance understanding of rare brain tumors by collecting biospecimens and clinical data from children, adolescents, and young adults diagnosed with these conditions. This prospective observational study will gather tumor samples along with matched clinical and radiological data, focusing on CNS sarcoma, BCOR, and other unclassified tumors. Participants will be followed for approximately 10 years to track outcomes and improve knowledge about these rare diseases.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis and treatment strategies for patients with rare brain tumors.
How similar studies have gone: Other studies focusing on rare tumors have shown promise in improving understanding and treatment, making this approach potentially beneficial.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with a known or suspected CNS Sarcoma. * Patients with a known or suspected BCOR-altered brain tumor * Patients with a known or suspected Astroblastoma/NM-1 altered brain tumor * Patients with known or suspected histologically ambiguous/unclassifiable brain tumor * Patients with a known or suspected rare brain tumor. * Signed informed consent by patient/ parent or guardian (assent where applicable) to participate in the study. Exclusion Criteria: * The patient has an extra-CNS primary tumor. * The patient is older than 46 years of age at diagnosis. * The patient or family is not willing to participate or does not sign informed consent.
Where it's running
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Children's Hospital Los Angeles
Los Angeles, California, United States Recruiting -
University of California San Francisco
San Francisco, California, United States Recruiting -
Children's National Hospital
Washington D.C., District of Columbia, United States Recruiting -
Ann & Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, United States Recruiting -
Akron Children's Hospital
Akron, Ohio, United States Recruiting -
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States Recruiting
Show 7 more locations
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TUCCA - Santa Marcelina
São Paulo, São Paulo, Brazil Recruiting -
HOMI - Fundación Hospital de la Misericordia
Bogotá, Bogota D.C., Colombia Recruiting -
Clinica Del Country
Bogotá, Colombia Recruiting -
Rambam Health Care Campus
Haifa, Israel Recruiting -
Schneider Children's Medical Center- CLALIT Health Services
Petah Tikva, Israel Recruiting -
Dana-Dwek Children's Hospital- Tel Aviv Medical Center
Tel Aviv, Israel Recruiting -
The Sheba Medical Center
Tel HaShomer, Israel Recruiting
Study contacts
- Principal investigator: Adriana Fonseca, MD — afonsecash@childrensnational.org
- Study coordinator: Adriana Fonseca, MD
- Email: afonsecash@childrensnational.org
- Phone: 202-476-8399
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
Ultra-Rapid Drug Screening Guide for Relapsed Rare Brain Tumors
This study tests a real-time, tissue-informed drug screening approach to guide personalized treatment for children and young adults with relapsed ultra-rare brain tumors.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.