Hear directly from experts from the PNOC Ependymoma Working Group about the current state of research and clinical trials for Ependymoma. Join Dr. Mariella Filbin, Dr. Eugene (Gene) Hwang and Dr. Torunn Yock, who are dedicated to changing the outcomes for children and young adults diagnosed with Ependymoma.
A key mechanism to support our translational research is through our PNOC Working Groups. The intent is to be collaborative, forward thinking, strategic, and efficient in developing clinical trials for the highest unmet need patients treated on PNOC studies.
Investigators from over 30+ institutions composing PNOC and the CBTN participate and meet to bring forward their best ideas and strategies for research. Consensus decisions for clinical trial development based upon high quality preclinical investigations are prioritized. Collaborating teams share data on a monthly or bi-monthly basis, analyze their findings, and share resources to hasten progress. The key goal is to develop the best trials possible through extensive preclinical testing as well as investigations using imaging, body fluids, tumor tissue and functional studies including quality of life and cognitive outcomes that are collected as part of ongoing PNOC trials.
Collaboration with the CBTN and partnership with many of our partner foundations has been a key element of PNOC’s success. Given the historical lack of funding for translational research in pediatric Neuro-Oncology, resources are also sought from philanthropic and advocacy groups, a traditional source of early-stage funding in our field. However, instead of philanthropic outreach occurring at the institutional or investigator level, it occurs as a multi-institutional, multi-investigator engagement on behalf of the entire working group’s defined aims and needs. To that end, the advocacy/philanthropic groups are themselves invited to become a part of the strategy, participating on the working group calls and meetings.