Ependymoma Outcomes Projects

Ependymoma Outcomes Projects

ependymoma outcomes hero

About the AEO and PEO Projects

Ependymoma can occur to individuals across lifespan regardless of age. With the ultimate goal of ensuring a uniformly high standard of care for all patients and improving our understanding of the issues faced by patients with this rare tumor, we have initiated the Adult and Pediatrics Ependymoma Outcomes Project (AEO and PEO). These are exciting initiatives that provide the opportunity to learn about the health status of both adults and children diagnosed with ependymoma and to use this information to improve patient care.

The CERN Foundation designed this project specifically for people (both adults and children) with ependymoma and their families. Any patient diagnosed with an ependymoma is welcomed to participate. For children (less than 18 years of age), we ask that both parent or proxy and the child participate. Information collected from our series of surveys will be analyzed by medical professionals and used to identify unique trends and potential ways of improving the care of ependymoma patients. For childhood ependymoma survivors and are older (or equal to) 18 years old, you can take either AEO or PEO whichever you are most comfortable with. If you choose to complete PEO, demographic and clinical information can be completed by the patient not the parent. Please contact us if you have any questions about this scenario.

Key Objectives of the Ependymoma Outcomes Projects

  • Gather information on the treatment strategies and health status of patients with ependymoma in the United States
  • Disseminate information to health care providers on the symptoms, treatment and outcomes of patients with ependymoma to improve health care practices
  • Publish objective data on trends and regional differences in the care of patients with ependymoma, with the goal to improve and standardize care
  • Develop new treatment strategies based on this data for future clinical trials to improve survival and outcome

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 18 years).

We designed the instructions for participation to be as simple and straightforward as possible.

Step-by-step registration instructions:

  1. 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 AEO or PEO Survey (Ependymoma Outcomes Questionnaire).
  2. 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, 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 Questionnaires: detailed questionnaires designed to capture data on treatment information and quality of life issues of ependymoma patients. Patients or parents of patients (for PEO project) 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. An incentive is provided for participants in the Pediatric Ependymoma Project and for ongoing participation in the Adult Ependymoma Project.

If you have any questions about this process, you are welcome to contact us at any time.

Those interested in viewing the questions before registering for the survey, may click here to download a pdf version of the questionnaire. 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.