What are rare brain tumors?
![Screen Shot 2020-07-17 at 5.16.43 PM Screen Shot 2020-07-17 at 5.16.43 PM](https://lab.research.sickkids.ca/annie-huang/wp-content/uploads/sites/91/2020/07/Screen-Shot-2020-07-17-at-5.16.43-PM-800x500.png)
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?
![Screen Shot 2020-07-17 at 5.16.06 PM Screen Shot 2020-07-17 at 5.16.06 PM](https://lab.research.sickkids.ca/annie-huang/wp-content/uploads/sites/91/2020/07/Screen-Shot-2020-07-17-at-5.16.06-PM-800x500.png)
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
![CollectData_Icon CollectData_Icon](https://lab.research.sickkids.ca/annie-huang/wp-content/uploads/sites/91/2020/07/CollectData_Icon.png)
Help us build large collections of materials and data for doctors and scientists to study new treatments
![FamilywithBrainCancer_Icon FamilywithBrainCancer_Icon](https://lab.research.sickkids.ca/annie-huang/wp-content/uploads/sites/91/2020/07/FamilywithBrainCancer_Icon-120x120.png)
Allow us to collect your child’s clinical data and tumor materials
![FamiliesConnecting_Icon FamiliesConnecting_Icon](https://lab.research.sickkids.ca/annie-huang/wp-content/uploads/sites/91/2020/07/FamiliesConnecting_Icon.png)
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](https://lab.research.sickkids.ca/annie-huang/wp-content/uploads/sites/91/2020/07/Curtis-Brown.png)
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](https://lab.research.sickkids.ca/annie-huang/wp-content/uploads/sites/91/2020/07/Marnie-Geniole.png)
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](https://lab.research.sickkids.ca/annie-huang/wp-content/uploads/sites/91/2020/07/Tal-Doron.png)
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.