About the Ependymoma Outcomes Project
Help us better understand outcomes for patients with ependymoma and use this information to improve patient care.
About the Ependymoma 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, the CERN Foundation launched the Adult and Pediatrics Ependymoma Outcomes Project (AEO and PEO) from 2010-2018. This exciting initiative provided the opportunity to learn about the health status of both adults and children diagnosed with ependymoma with the goal of using the information to improve patient care.
The CERN Foundation designed this project specifically for people (both adults and children) with ependymoma and their families. Information collected from the series of surveys was analyzed by medical professionals and was used to identify unique trends and potential ways of improving the care of ependymoma patients.
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
Expansion to the Outcomes and Risk Study for Patients with Rare Brain and Spine Tumors
The CERN Foundation invested in the first research effort of its kind to investigate ependymoma outcomes. The result was a highly successful project called the Ependymoma Outcomes Project lead by Dr. Terri Armstrong. As a result of this effort and recognized need for further information, CERN supported the expansion of the successful Ependymoma Outcomes Project to the Outcomes and Risk Study for Patients with Rare Brain and Spine Tumors at the NIH through the NCI-CONNECT program. The CERN Foundation is a program of the National Brain Tumor Society and is an official partner of the NCI-CONNECT program.
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.