To hear about similar clinical trials, please enter your email below
Trial Title:
International Rare Brain Tumor Registry
NCT ID:
NCT05697874
Condition:
Astroblastoma
BCOR ITD Sarcoma
CNS Sarcoma
Unclassified Tumor, Malignant
Conditions: Official terms:
Neoplasms
Sarcoma
Brain Neoplasms
Neoplasms, Neuroepithelial
Conditions: Keywords:
Rare Brain Tumor
Pediatric Brain Tumor Registry
Unclassifiable tumor
Pediatric Neuro-Oncology
Rare Disease
Study type:
Observational [Patient Registry]
Overall status:
Recruiting
Study design:
Time perspective:
Prospective
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.
Detailed description:
The International Rare Brain Tumor Registry (IRBTR) is a prospective observational study
that will collect tumor samples and matched clinical and radiological data to better
understand the outcomes of patients with rare brain tumors in particular: CNS sarcoma,
BCOR, MN-1 altered tumors, and other unclassified rare brain tumors.
Data collected include demographics, disease characteristics, treatment information,
radiological imaging, and biospecimen collection if available ( tumor tissues Patients
will be followed longitudinally to obtain outcome data. Data collection will continue for
approximately 10 years.
Criteria for eligibility:
Study pop:
The study population will include patients who have completed the informed consent
process and are <= to 45 years of age at diagnosis of the following: CNS Sarcoma,
BCOR-altered tumor, Astroblastoma/MNI-1 altered tumors, histologically
ambiguous/unclassifiable brain tumor, rare brain tumor. Patients from anywhere in the
world are eligible for enrollment.
Sampling method:
Non-Probability Sample
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.
Gender:
All
Minimum age:
N/A
Maximum age:
45 Years
Healthy volunteers:
No
Locations:
Facility:
Name:
Children's National Hospital
Address:
City:
Washington
Zip:
20010
Country:
United States
Status:
Recruiting
Contact:
Last name:
Adriana Fonseca, MD
Phone:
202-476-3899
Email:
afonsecash@childrensnational.org
Contact backup:
Last name:
Lane Williamson
Phone:
202-476-5111
Email:
lwilliamso@childrensnational.org
Investigator:
Last name:
Adriana Fonseca, MD
Email:
Principal Investigator
Investigator:
Last name:
Roger J. Packer, MD
Email:
Principal Investigator
Start date:
January 1, 2023
Completion date:
December 2033
Lead sponsor:
Agency:
Children's National Research Institute
Agency class:
Other
Source:
Children's National Research Institute
Record processing date:
ClinicalTrials.gov processed this data on November 12, 2024
Source: ClinicalTrials.gov page:
https://clinicaltrials.gov/ct2/show/NCT05697874
