International Rare Brain Tumor Registry

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International Rare Brain Tumor Registry

Study Purpose

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.

Recruitment Criteria

Accepts Healthy Volunteers Healthy volunteers are participants who do not have a disease or condition, or related conditions or symptoms	No
Study Type An interventional clinical study is where participants are assigned to receive one or more interventions (or no intervention) so that researchers can evaluate the effects of the interventions on biomedical or health-related outcomes. An observational clinical study is where participants identified as belonging to study groups are assessed for biomedical or health outcomes. Searching Both is inclusive of interventional and observational studies.	Observational [Patient Registry]
Eligible Ages	N/A - 45 Years
Gender	All

More 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.

Trial Details

Trial ID: This trial id was obtained from ClinicalTrials.gov, a service of the U.S. National Institutes of Health, providing information on publicly and privately supported clinical studies of human participants with locations in all 50 States and in 196 countries.	NCT05697874
Phase Phase 1: Studies that emphasize safety and how the drug is metabolized and excreted in humans. Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition) and additional safety data. Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs. Phase 4: Studies occurring after FDA has approved a drug for marketing, efficacy, or optimal use.
Lead Sponsor The sponsor is the organization or person who oversees the clinical study and is responsible for analyzing the study data.	Children's National Research Institute
Principal Investigator The person who is responsible for the scientific and technical direction of the entire clinical study.	Adriana Fonseca, MD
Principal Investigator Affiliation	[email protected]
Agency Class Category of organization(s) involved as sponsor (and collaborator) supporting the trial.	Other
Overall Status	Recruiting
Countries	United States
Conditions The disease, disorder, syndrome, illness, or injury that is being studied.	Astroblastoma, BCOR ITD Sarcoma, CNS Sarcoma, Unclassified Tumor, Malignant

Additional Details

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.

Arms & Interventions

Arms

: 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.

Interventions

Contact a Trial Team

If you are interested in learning more about this trial, find the trial site nearest to your location and contact the site coordinator via email or phone. We also strongly recommend that you consult with your healthcare provider about the trials that may interest you and refer to our terms of service below.

Children's National Hospital, Washington, District of Columbia

Status

Recruiting

Address

Children's National Hospital

Washington, District of Columbia, 20010

Site Contact

Adriana Fonseca, MD

[email protected]

202-476-3899