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A doctor shares a scan of a brain on a tablet in a patient consultation

Provider Resources

A doctor shares a scan of a brain on a tablet in a patient consultation

Our Invitation to Physicians and Researchers

We welcome physicians and researchers to refer their patients to the International Rare Brain Tumor Registry. Once your patient is enrolled, you’ll provide our team with their key biological, clinical and radiological data to be entered into the registry.

From the outset of a rare brain tumor diagnosis, the registry tracks information from the biorepository into an analysis of clinical data and more, ultimately leading to treatment innovations.

What is the criteria to participate?

To be eligible to participate in the registry, patients must be younger than 46 years old at the time of diagnosis and be diagnosed with one of the following rare conditions:

  • CNS sarcoma
  • BCOR-altered tumor
  • Astroblastoma/MN-1 altered tumor
  • Histologically ambiguous/unclassifiable tumor
  • Other rare brain tumor

What does the registry collect?

Clinical data including:

  • Demographics, tumor location, staging, pathology and molecular reports
  • Imaging, such as MRI imaging
  • Treatment information and disease course

Biospecimens (optional):

  • Tumor tissue
  • Blood
  • Cerebrospinal fluid (CSF)

For patients enrolled in our prospective cohort, providers will also be asked to submit updates to the registry twice a year.

Participating Sites in the International Rare Brain Tumor Registry

World map showing participating sites in the International Rare Brain Tumor Registry

Participating Research Sites

    Presentations and Publications

    • Clinical and Molecular Characterization of DICER-1 mutant CNS sarcomas, International Society of Pediatric Oncology, Philadelphia, June 29, 2024

    • Pediatric Neuro-Oncology Symposium, Washington, D.C., May 2024

    • Dowiak* A, Williamson* L, Povilaikaite* J, Cabrera E, Aponte N, Garcia J, Quiroz L, Piña M, Martinez C, Valencia D, Barragan L, Reséndiz AB, Magelssen H, Trujillo Á, Osorio D, Figueredo O, Packer R, Sarmiento I, Suarez A, Mushtaq N, Abdullaev Z, Poria D, Bartels U, Bouffett E, Polo BR, Aldape K, Ramaswamy V, Fonseca A. ETMR-30. Clinical and molecular characterizaion of dicer-mutant central nervous system sarcoma. Neuro Oncol. 2024 Jun 18;26(Suppl 4):0. doi: 10.1093/neuonc/noae064.200. PMCID: PMC11183751.

    Call for Collaborators

    Interested in Becoming a Partner?

    If you are a physician or researcher interested in partnering with the International Rare Brain Tumor Registry, please complete our form.

    Complete our interest form