International Rare Brain Tumor Registry
Status: Recruiting
Location: See all (4) locations...
Study Type: Observational
SUMMARY
The objective of the International Rare Brain Tumor Registry (IRBTR) is to better understand rare brain tumors through the collection of biospecimens and matched clinical data of children, adolescents, and young adult patients diagnosed with rare brain tumors.
Eligibility
Participation Requirements
Sex: All
Maximum Age: 45
Healthy Volunteers: f
View:
• 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.
Locations
United States
California
Nathan Robison
RECRUITING
Los Angeles
Marie Jaeger-Krause
RECRUITING
San Francisco
Washington, D.c.
Children's National Hospital
RECRUITING
Washington D.c.
Ohio
Scott Raskin
RECRUITING
Cincinnati
Contact Information
Primary
Adriana Fonseca, MD
afonsecash@childrensnational.org
202-476-8399
Backup
Skyler Speciale, RN
sspeciale@childrensnational.org
202-476-4384
Time Frame
Start Date: 2023-01-01
Estimated Completion Date: 2033-12
Participants
Target number of participants: 5800
Treatments
CNS Sarcoma
Patients diagnosed with Central nervous system (CNS) sarcomas
BCOR-altered
Patients diagnosed with tumors characterized by alterations in the BCOR gene.
Astroblastoma/MN-1- altered
Patients diagnosed with Astroblastomas/MN-1 alterations
Unclassifiable tumors
Patients diagnosed with histologically ambiguous tumors or tumors that fail to classify with the current diagnostic methods.
Other Rare Brain tumors
Patients diagnosed with other rare brain tumors that do not meet the criteria for cohorts 1-4.
Related Therapeutic Areas
Sponsors
Leads: Children's National Research Institute