Participate in the Outcomes and Risk Project

The research project intends to answer the one question that plagues most all patients: Why did this happen to me?

The CERN Foundation invested in the first research effort of its kind to investigate ependymoma outcomes. This highly successful project called the Ependymoma Outcomes Project was led by Dr. Terri Armstrong.  As a result of this effort and recognized need for further information and understanding disease-related issues, CERN supported the expansion of the successful Ependymoma Outcomes Project to improve the understanding of risk factors related to the occurrence of rare central nervous system (CNS) tumors. 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. 

The expanded Rare CNS Tumors Outcomes and Risk Study is led by the National Institutes of Health NCI-CONNECT program. The CERN Foundation is a program of the National Brain Tumor Society and both are official partners of NCI-CONNECT. The NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) aims to advance the understanding of rare adult central nervous system (CNS) cancers by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment.

Participating in the Rare CNS tumors Outcomes and Risk study will help pave the path toward improving our understanding of risk factors associated with the occurrence of rare CNS tumors. The Outcomes and Risk study is designed for adults diagnosed with rare CNS tumors, including ependymoma. If you take part in this study, you will be asked to complete online surveys and submit a saliva sample that will be used for genetic testing to evaluate risk factors, and you may choose to submit medical records related to our Rare CNS tumor. The instructions for participation were designed to be as simple and straightforward as possible.

Efforts such as this would not be possible without the selfless contributions of patients like you.


Temporarily Closed to Enrollment

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