Registry for rare brain tumors in children and young adults
International Rare Brain Tumor Registry
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 |
|---|---|
| Enrollment | 5800 (estimated) |
| Ages | N/A to 45 Years |
| Sex | All |
| Sponsor | Children's National Research Institute Academic / other |
| Locations | 10 sites (Los Angeles, California and 9 other locations) |
| Trial ID | NCT05697874 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
Not a fit: Patients over 46 years of age or those with extra-CNS primary tumors will not benefit from this study.
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 performed: Other studies focusing on rare tumors have shown promise in improving understanding and treatment, making this approach potentially beneficial.
Eligibility criteria
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 this trial is running
Los Angeles, California and 9 other locations
- 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)
- 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 Litwinsky, 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.