What are rare brain tumors?

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Rare types of highly malignant brain cancers found in children

  • CNS embryonal tumors
  • Tumors previously called CNS-PNET (central nervous system); sPNET (supratentorial primitive neuroectodermal tumors)
  • Pineoblastomas (PBs)
  • ATRTs (atypical teratoid rhabdoid tumors)
  • ETMRs (embryonal tumors with multilayered rosettes)
  • ETANTRs (embryonal tumors with abundant neuropil and true rosettes)
  • Medulloepithelioma
  • Ependymoblastoma

Why join the registry?

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Rare childhood brain tumors are challenging diseases

  • They have low survival rates
  • Doctors and scientist know little about them
  • As little is known, they can often be misdiagnosed and treated as other diseases
  • They are rare—so doctors and scientist lack materials to study them
  • We can link you up with an RBTC network of expert doctors in your country or community
  • We can help with second medical opinions if your doctors need them

You can help cure rare childhood brain tumors

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Help us build large collections of materials and data for doctors and scientists to study new treatments

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Allow us to collect your child’s clinical data and tumor materials

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Link us to other families of children with rare brain cancers

Who does this apply to?

  • Patients with a diagnosis of a rare brain tumor including ATRT, pineoblastoma, ETMR, and tumors known as PNETs
  • The registry collects information and samples from both living and deceased patients

How do I join the registry?

If you child has a confirmed/suspected diagnosis:

Please ask your healthcare provider to contact our team (rbt.consortium@sickkids.ca)

Provide your legal permission:

A consent form will be provided to you/your child’s doctor to document your approval to join the RBTC

Confirming registration of your child:

The RBTC will provide written confirmation to you/your child’s doctor

How will my child’s privacy be protected?

You/your child’s information:

  • Will be anonymized and assigned a case number upon registration in the RBTC
  • Will be stored in an electronic database only accessed by authorized members (the RBTC manager and the principal investigator)
  • Will be stored in a secure hospital-approved encrypted or coded computer system that meets all provincial and national security and ethics guidelines

Patient stories

Curtis Brown

Curtis Brown (“CJ”)

CJ was diagnosed with rhabdoid brain tumor/ATRT at the age of 22 months. He was treated with an intensive chemotherapy regimen but had persistent disease and received re-treatment with a new SickKids standard-of-care (SOC) radiation-sparing protocol. He is now a happy, healthy teenager!

Marnie Geniole

Marnie was diagnosed at the age of 2 years with ETMR, a highly aggressive brain tumor. She received aggressive tumor surgery, together with high-dose chemotherapy and stem cell transplant with tumor-only radiation. Marnie is now attending school! https://www.miraclemarniefoundation.com/

Tal Doron (“Tali”)

Tal (affectionately known as “Tali”) was treated with aggressive chemotherapy for metastatic rhabdoid brain tumor/ATRT.  Unfortunately, Tali’s tumor grew despite therapy, and she passed away at the age of 4 years. Tali’s fund (https://talisfund.org/) marks her legacy: strength, loving nature, and determination.