Participate and Register for the Adult Ependymoma Outcomes (AEO) and Pediatric Ependymoma Outcomes (PEO) Projects
Participating in the AEO and PEO Projects will help pave the path toward improving treatment for patients with ependymoma. Efforts 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. The AEO Project is designed for adults diagnosed with ependymoma and the PEO project is designed for children (younger than 17 years).
We designed the instructions for participation to be as simple and straightforward as possible.
Step-by-step 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 email notification will be sent to a CERN Member who will contact you with instructions to complete the Patient Survey (Ependymoma Outcomes Questionnaire).
- Results of the survey will be shared (anonymously on the CERN Foundation website) when completed.
Please note: internet access is required for immediate enrollment. However, if you know someone who does not have internet access, please contact us to have hard copies mailed to a preferred address. (Please reference the Ependymoma Outcomes Projects in your subject line).
The Enrollment Form and the Ependymoma Outcomes Questionnaires are housed at a separate and secured website called surveymonkey.com. By clicking on either enrollment forms, you will be directed to this secure third-party site.
EO Project Form Descriptions:
Enrollment Forms: brief questionnaire designed to capture demographic data. Completion time is approximately five to 10 minutes.
Adult Ependymoma Outcomes and Pediatric Ependymoma Outcomes Questionnaires: detailed questionnaires designed to capture data on treatment information and quality of life issues of ependymoma patients. Patients will be contacted via email or physical mail once the completed enrollment form is received. Completion time is approximately 15 to 20 minutes.
If you have any questions about this process, you are welcome to contact us at any time. (Please reference the Ependymoma Outcomes Projects in your subject line)
EO Project Privacy Statement
The information provided on this website is for general health information purposes only, and is not intended to replace professional medical advice, diagnosis or treatment by a qualified health care provider. Use of any information provided on this website does not create an expressed or implied physician-patient relationship and does not obligate M. D. Anderson or CERN Foundation to follow up or contact any user of the information. Accordingly, you should not rely exclusively on information provided on this website for your health needs, should not disregard or delay seeking professional medical advice because of any information provided on this website and should present to your own health care provider all specific medical questions concerning your health. In no event will M. D. Anderson, CERN Foundation or any other party creating, producing or delivering the information provided on this website be liable in any manner whatsoever for any use of the information or any decision made or action or non-action taken based on the information.