DEFEATING EMBRYONAL CANCER IN YOUNG PEOPLE TOGETHER

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What are embryonal brain tumours?

Embryonal brain tumours are the largest category of brain tumours diagnosed in children aged 0-14 years

 

FACTs  

  •  About 40-60% are “infant brain cancers” – affecting children 0-5 yrs of age  
  • often high-risk diseases which can spread to other parts of the brain and spine. 
  • Include rare cancers – ATRTs, ETMRs, Pineoblastoma  
  • Often treated with a combination of surgery, chemotherapy and brain/spine radiation  

 

CHALLENGES: 

  • Best treatment for aggressive and high-risk infant brain cancer remains unknown 
  • All patients worldwide receive highly intense multi-prong therapy including surgery, intensive chemotherapy and radiation 
  • High intensity therapy improves outcomes in only 30-50% of patients with aggressive infant embryonal brain cancer  
  • Infant brain cancer patients who survive have severe long-term neurological damage from brain and spine radiation treatment  

Barriers to precision medicine for infant brain cancers 

  • Lack of a consistent framework for therapy worldwide 
  • Effectiveness of therapy is often unpredictable 
  • Lack of tools to determine which patients need less or more treatment  
  • Lack of precise tools to detect treatment failure or response in real time  

 

 

OUR GOALS  –

To establish a precision model of treatment for infant and rare brain cancers

To limit or eliminate radiation treatment for infant and rare brain cancers  

To treat patients using specialized drugs and dosages, tailored to their unique situation  

 

DECRYPT – a multi-centre national trial built on a SickKids radiation avoidance protocol for infant and rare brain cancer  

Learn about DECRYPT on ClinicalTrials.Gov

Since 2005 doctors at SickKids have used a standard treatment protocol which combines chemotherapy delivered directly into fluid surrounding the brain and spine, and addition of low dose chemotherapy to avoid or limit radiation in patients with infant and rare brain cancers. This Standard of Care (SKSOC) experience has shown > 60% of ATRT patients can be cured without brain radiation. 

The DECRYPT trial is a national collaborative multi-centre trial which will evaluate whether the SKSOC radiation avoidance protocol can be safely and effectively implemented across Canada for children 0-6yrs old diagnosed with high-risk embryonal brain tumors (HR-EBTs). 

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Patients Enrolled On DECRYPT BABYBRAIN

Patients enrolled on DECRYPT trial will have access to  

  •  Advanced molecular testing 
  •  Discussion and review by a dedicated team of experts at a national tumour board. 
  • Opportunity to help develop advanced tools to monitor treatment response precisely and rapidly and to identify new precision medicine drugs 
  • Opportunity to help transform care for infant brain cancer patients 

Trial Team

Our Site Leads

Thank you to our Sponsors

A message from one of our key partners

For nearly twenty years, Tali’s Fund has walked alongside the extraordinary work of Dr. Annie Huang and the Rare Brain Tumour Consortium. Our connection began when my daughter, Tali, was diagnosed at age three with ATRT, a rare embryonal brain tumour. She lived only nine more months. Losing her changed our lives forever, and it revealed, with devastating clarity, how urgently families need better options, better understanding, and real hope.

Since then, we have watched the RBTC push boundaries with courage, compassion, and an unwavering commitment to children facing these rare diseases. The DECRYPT-BABYBRAIN trial is a landmark next step – a national effort that brings centres across Canada together to offer a safer, more unified, and more hopeful path forward.  We are deeply grateful to stand with the remarkable coalition of charitable partners who helped bring this ambitious initiative to life, united in the belief that our children deserve better.

We believe DECRYPT will open doors to new possibilities in precision medicine, more consistent care, and most importantly, a better chance at both survival and a meaningful future. Tali’s Fund is honoured to support this work and to stand beside the RBTC as we move toward a brighter future for families affected by these rare tumours.

Kim Kowarsky Doron, Co-Founder and President of Tali’s Fund

To learn more about Tali’s Fund and their ongoing impact, please visit www.talisfund.org.