For Patients & Families

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

Shared with Permission

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.