Participate In Our Online Ependymoma Outcomes Surveys
— Categories: Press Release Posted on September 18, 2015
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).
You 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:
- Click on the link for the Adult Ependymoma Outcomes Enrollment Form OR the Pediatric Ependymoma Outcomes Enrollment Form.
- 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 AEO project!
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:
- For the Adult EO result report, click here.
- For the Pediatric EO result report, click here.
We have also shared these results in published papers for the medical community.
- CERN Presentation and Outcomes for Adult Patients With Ependymoma - This was a catalyst in exploring disease and treatment related factors associated with outcomes in patients with disease in the brain versus spinal cord and this report provides a comprehensive update of the clinical presentation and outcomes of this large population of ependymoma patients.
- CERN Investigators Publish Paper on Symptoms and Socio-economic Impact of Ependymoma - Find out what we learned from our Ependymoma Outcomes Projects (patient symptoms, function status and costs encountered by patients and families).
- CERN Investigators Publish Paper on Ependymoma Outcomes in Cancer Journal - A study by the CERN Foundation, led by researchers from the University of Texas Health Science Center and University of Texas M.D. Anderson Cancer Center, has reported on the clinical course and current health status from one of the largest cohorts of adults with ependymoma.