RECRUITING

International Rare Brain Tumor Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

International Rare Brain Tumor Registry

Quick Facts

Study Start:2023-01-01
Study Completion:2033-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05697874

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified to 45 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT
Inclusion CriteriaExclusion Criteria
  1. * Patients with a known or suspected CNS Sarcoma.
  2. * Patients with a known or suspected BCOR-altered brain tumor
  3. * Patients with a known or suspected Astroblastoma/NM-1 altered brain tumor
  4. * Patients with known or suspected histologically ambiguous/unclassifiable brain tumor
  5. * Patients with a known or suspected rare brain tumor.
  6. * Signed informed consent by patient/ parent or guardian (assent where applicable) to participate in the study.
  1. * The patient has an extra-CNS primary tumor.
  2. * The patient is older than 46 years of age at diagnosis.
  3. * The patient or family is not willing to participate or does not sign informed consent.

Contacts and Locations

Study Contact

Adriana Fonseca, MD
CONTACT
202-476-8399
afonsecash@childrensnational.org
Lane Williamson, BA
CONTACT
202-476-5111
lwilliamso@childrensnational.org

Principal Investigator

Adriana Fonseca, MD
PRINCIPAL_INVESTIGATOR
afonsecash@childrensnational.org

Study Locations (Sites)

Children's National Hospital
Washington, District of Columbia, 20010
United States

Collaborators and Investigators

Sponsor: Children's National Research Institute

  • Adriana Fonseca, MD, PRINCIPAL_INVESTIGATOR, afonsecash@childrensnational.org

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2023-01-01
Study Completion Date2033-12

Study Record Updates

Study Start Date2023-01-01
Study Completion Date2033-12

Terms related to this study

Keywords Provided by Researchers

  • Rare Brain Tumor
  • Pediatric Brain Tumor Registry
  • Unclassifiable tumor
  • Pediatric Neuro-Oncology
  • Rare Disease

Additional Relevant MeSH Terms

  • Astroblastoma
  • BCOR ITD Sarcoma
  • CNS Sarcoma
  • Unclassified Tumor, Malignant