Ependymoma Guide - Third Edition Released
— Categories: Press Release Ependymoma Community Posted on June 14, 2024
The CERN Foundation, a program of the National Brain Tumor Society, recently released the third edition of the Ependymoma Guide. The goal of this guide is to provide basic facts about ependymoma to increase education and awareness about the rare disease.
The CERN Foundation, a program of the National Brain Tumor Society, recently released the third edition of the Ependymoma Guide. The goal of this guide is to provide basic facts about ependymoma to increase education and awareness about the rare disease. The focus audience includes newly diagnosed patients, care partners, and advocates. The first edition of the Ependymoma Guide was launched in 2013 and the second edition in 2017.
The third edition of the Ependymoma Guide features a variety of updates that span multiple topics including scientific information, community involvement, organizational changes, and more. Most notably, the new guide includes:
- Updates from the 2021 WHO classification, which made significant changes to brain and spine tumor classification and grading
- Updated data from the 2023 published CBTRUS report
- Information from NBTS, including the Clinical Trial Finder and Community Resources
- Information from the NCI-CONNECT program
- New additions include the Ependymoma Key Issues document, highlighting the collaborative efforts of multiple community leader
The Ependymoma Guide will be available in digital format on the CERN Foundation website, the National Brain Tumor Society website, and other collaborative partner websites. The Ependymoma Guide is a valuable resources to the community and offers education, insight, and connection.
“I wouldn't know half of what I know about my diagnosis if it wasn't for CERN. They gave me a simple roadmap that can lead to big changes in my recovery. When I was diagnosed with ependymoma, I metaphorically felt like I was drowning. Now I feel like I have a life jacket on, and I'm able to swim a little bit. CERN gave me the oomph to keep on going.” — Jess
We would like to acknowledge the contributions made to the third edition of the Ependymoma Guide from the National Brain Tumor Society staff, Dr. Kristian Pajtler, Dr. Amar Gajjar, and Kelly Hancock. The NCI-CONNECT team — Dr. Marta Penas-Prado, Dr. Byram Ozer, Dr. Mark Gilbert, Dr. Terri Armstrong, Lisa Boris, and Brittany Cordeiro — provided an expert review of the guide. Thank you to the Central Brain Tumor Registry of the United States (CBTRUS) Scientific Team, especially Carol Kruchko, Quinn T. Ostrom, PhD, and Corey Neff, MPH, for providing statistical oversight.
The CBTRUS data were provided through an agreement with the Centers for Disease Control’s National Program of Cancer Registries. In addition, CBTRUS used data from the research data files of the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program, and the National Center for Health Statistics National Vital Statistics System. Contents are solely the responsibility of the authors and do not necessarily represent the official views of the CDC or the NCI.
The third edition of the Ependymoma Guide is dedicated in honor of Eva DeLotto and was supported by the DeLotto family and the Childhood Brain Cancer Research Collaborative (CBCRC).