Take Our Outcomes Survey

Help us better understand outcomes for patients with ependymoma and use this information to improve patient care.

About the Outcomes Project

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 who are older (or equal to) 18 years old, you can take either the AEO or PEO whichever you are most comfortable with. If you choose to complete the 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 Outcomes and Risk Project

CERN is expanding the work of our successful Ependymoma Outcomes Surveys to improve our understanding of risk factors associated with the occurrence of rare CNS tumors, including ependymoma. Click on the link to learn more about the Adult Outcomes and Risk Project.

Participate and Register for the Pediatric Ependymoma Outcomes Project

Participating in the PEO Project 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 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:

  • Click on the link for 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.

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.
  • Pediatric Ependymoma Outcomes Questionnaire: 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.

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.armstrong@nih.gov.

Outcomes Projects Results

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