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New CERN Project Now Enrolling

Participate in the Ependymoma Outcomes and Risk Project!

This project intends to answer the one question that plagues most all patients: Why did this happen to me? 
Ependymoma Outcomes and Risk Project

CERN is expanding the work of our successful Ependymoma Outcomes Surveys to improve our understanding of risk factors associated with the occurrence of ependymoma. Research has shown that certain risk factors may increase a person’s chances of developing cancer. Factors can include exposure to chemicals or other substances, personal and family medical history. 
If patients take part in this study, they will be asked to complete an online survey and submit a saliva sample that will be used for genetic testing to evaluate for risk factors. The Ependymoma Outcomes and Risk study is designed for adults diagnosed with ependymoma. In the future, pediatric patients and their families will be included in a subsequent study. An update will be provided when this becomes available.

Novel Ependymoma Investigations Stem from the CERN Research Fellowship 

Neuro-oncologist Vijay Ramaswamy, M.D., Ph.D., is fascinated with the biology of ependymoma.

“It’s a bit of a black box,” he says. “It’s a tumor that does not respond to conventional therapy, so it’s very different than other brain tumor types.”

Dr. Ramaswamy practices at The Hospital for Sick Children in Canada. He is studying the molecular biology of ependymoma to develop therapies to improve survival.

His research is aided by an award from the CERN Foundation, the inaugural CERN Basic Science Ependymoma Research Fellowship. Dr. Ramaswamy received the competitive award in late 2015, which provides $50,000 for two years, and he’s already made strides in his research.

Completing the largest-ever ependymoma study

In 2016, Dr. Ramaswamy and Michael Taylor, M.D., Ph.D., a neurosurgeon at The Hospital for Sick Children and a scientist at the University of Toronto in Canada, completed the largest-ever study analyzing 820 posterior fossa ependymoma cases. The study classified the molecular biology of the tumors and reviewed their clinical information. The results were both predictable and surprising, says Dr. Ramaswamy.

“We confirmed that the molecular subgroup of the tumor matters the most,” he explains. The two distinct subgroups of posterior fossa ependymoma are Group A and Group B. Group A is prevalent in infants and young children (younger than age 5), and has poor outcomes and the most deaths. Group B is common in young adolescents (older than age 6) and adults, and conversely, has better outcomes.  

“What surprised us was that the treatment mattered,” says Dr. Ramaswamy. Surgery and radiation were really important treatments for patients with Group A tumors to have good outcomes. “But if patients had an incomplete surgical resection, they did poorly whether or not they had radiation,” says Dr. Ramaswamy.

The study also showed that Group B ependymoma could be cured with surgery alone. “If we could spare patients the side effects of radiation, that would be impactful,” says Dr. Ramaswamy.

The study was published in the Journal of Clinical Oncology and furthers his aim is to develop a better treatment risk clarification for children with posterior fossa ependymoma. 

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