Study type: Prospective questionnaire study
Institution: Collaborative Ependymoma Research Network (CERN)
We designed the Ependymoma Outcomes Project (EO Project) to gather information to better understand outcomes for adult patients with ependymoma brain tumors.
The CERN Foundation based the EO Project on the Glioma Outcome (GO) project, a similar study conducted for understanding outcomes for patients with the more common primary brain tumor, glioblastoma (GBM). The CERN advisory committee controls the dissemination of aggregate data on treatment practices and outcomes.
Key objectives of the EO Project are to:
- Gather information on the treatment strategies and health status of adult patients with ependymoma brain tumors in the United States
- Provide information to health care providers on the symptoms, treatment and outcomes of patients with ependymoma brain tumors to improve health care practices
- Publish objective data on trends and regional differences in the care of adult patients with ependymoma brain tumors, 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.
Ependymomas are rare tumors, accounting for two to eight percent of all primary central nervous system tumors. Currently, there are limited reports describing patient presentation and outcome, but these reports do not contain patient reports of health status and quality of life. Thus, the impact of ependymoma cancer on patients and families is difficult to ascertain.
What we hope to accomplish
Developing a database on the treatment and health status of patients with ependymoma cancer will provide valuable information for the evaluation and improvement of care.
Patients or family members will complete standard data forms with questions related to diagnosis, treatment and overall health status. These forms were initially developed for the GO project and were modified for use by adult ependymoma patients or family self reports. Data will be collected at baseline, and between six months and one year from initial completion of forms.