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Ependymoma Outcomes Projects


Meet the CERN Team

Alvina Acquaye, MS
Each month at the CERN Foundation we sit down with unique and inspiring individuals that work to make this effort a success. This month we talked with Alvina Acquaye, MS about her participation in the Ependymoma Outcomes Projects, whose goals are to increase quality of life in patients diagnosed with an ependymoma. 
Inspriational Stories
2015 EAD

Participate in our online ependymoma outcomes surveys! 

The Ependymoma Outcomes Projects are online surveys created for both adults (Adult Ependymoma Outcomes or AEO) and children with ependymoma  (Pediatric Ependymoma Outcomes or PEO). 

Your participation in this effort will allow us to continue to improve our understanding of the experience and current health status of those living with ependymoma. Research such as this would not be possible without the selfless contributions of patients like you. Treatment and quality of life issues are crucial with any patient group, especially for patients with ependymoma. Completion time is approximately 15 to 20 minutes for each participant.

Step-by-step survey registration instructions:

  1. Click on the link for the Adult Ependymoma Outcomes Enrollment Form OR the Pediatric Ependymoma Outcomes Enrollment Form.
  2. Once you have completed the online form, an e-mail notification will be sent to the project coordinator who will contact you with instructions to complete the Ependymoma Outcomes Questionnaire.

Results of the survey will be shared (anonymously on the CERN Foundation website) when completed and by publication in peer-reviewed journals.

Read about what we have learned to-date through the EO projects!

We have learned a lot about the experience of the person with ependymoma and their family. You can view our results on the website, by clicking on the links below:

We have also shared these results in published papers for the medical community.

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