Update on CERN Awareness, Outreach and Outcomes
Update on CERN Awareness, Outreach and Outcomes
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An Update on the CERN Foundation's Awareness,

Outreach and Outcomes Projects

Pre-order A FREE Ependymoma Guide

We are in the process of completing the second edition of our ependymoma guide - a resource for patients, caregivers and advocates.
The goal of this guide is to provide you with the basic facts surrounding ependymoma, its diagnosis and treatment.
If you would like to pre-order a copy of the guide, send the following information to administrator@cern-foundation.org:  Your name, mailing address, phone or e-mail. Indicate if you would like a pdf or mailed copy.
The book will be mailed or e-mailed to your address in the Summer of 2016.
EOP Results
Ependymoma Outcomes Projects
EAD video

Awareness, Outreach and Outcomes Update

To better understand the impact of an ependymoma diagnosis and subsequent treatments on patients, their families and the community, Terri Armstrong, Ph.D., is leading Patient Outcomes and Symptom Management Projects for the CERN Foundation.
Of her most successful projects is the Ependymoma Outcomes Project, an online survey for adult and pediatric ependymoma patients, and the parents of pediatric patients. The project, in its fourth year, has had 280 adults and 79 kids and their parents participate.
The project questionnaire is allowing Dr. Armstrong to learn what life is like for people with ependymoma before, during and after treatment. And it’s yielding compelling results.
Dr. Armstrong has learned that about 50% of adult ependymoma patients who have completed treatment and have stable disease or their disease is in remission do not go back to work. This was a surprising and telling result, Dr. Armstrong explains, as most adult patients with low-grade disease live a long life post-treatment, so not returning to work can have a great impact on their well-being.
Dr. Armstrong and her team have also discovered that there is a large percentage of adult ependymoma patients who continue to have symptoms even though they’re done with treatment and their disease is stable or in remission. Survey results showed almost a third of adult patients are on pain medications or narcotics, and about 30% report feeling depressed.

Ependymoma Awareness Day Outreach

In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking May 2, 2016, as Ependymoma Awareness Day.

Collectively, these events helped to create a greater understanding of ependymoma. Here are a few of the activities that were held around the world this year!  READ MORE

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