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 (less than 18 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 the project coordinator who will contact you with instructions to complete either the AEO or PEO Survey (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.
Please note: internet access is required for immediate enrollment. However, if you know someone who does not have internet access, contact us to have hard copies mailed to a preferred address.
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 Questionaires: 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 for each participant. If you have any questions about this process, you are welcome to contact us at any time.
If you are interested in reproducing this questionnaire or using for your own research, please contact Dr. Terri Armstrong at Terri.S.Armstrong@uth.tmc.edu.