Until now, the Chordoma Foundation has focused primarily on advancing laboratory research to identify potential therapeutic targets and treatment approaches for chordoma. Over the past seven years, the Foundation’s investments in research have significantly accelerated the pace of discovery and produced exciting advances, some of which have helped pave the way for a series of upcoming clinical trials.
Well on the way to accomplishing many of our initial research goals, we are now making plans to expand the Foundation’s work in two ways.
First, we are redoubling our commitment to serve the chordoma patient community and improve the lives of those affected by the disease. To that end, we are developing plans to roll out a suite of new services and resources that will help patients and caregivers become better educated about chordoma, get the best treatment possible, and effectively deal with practical and emotional challenges that come with a chordoma diagnosis.
Second, with opportunities for several clinical trials on the horizon, we are developing a strategy to position the Foundation to most effectively facilitate future clinical research.
To guide development of our community services and clinical research strategies, we have recently assembled a Medical Advisory Board (MAB) comprised of nine of the world’s leading chordoma specialists representing multiple disciplines and institutions. The inaugural chair of the MAB is Dr. Chandra Sen, a world-renowned skull base surgeon, who also serves on the Foundation’s Board of Directors.
The first meeting of the MAB was held on August 16th at the NYU Langone Medical Center in New York City. The full day meeting included discussion about how the Foundation could most effectively improve the standard of care for chordoma, facilitate clinical research, help patients get optimal care, and meet the various needs of the chordoma patient community.
“Our inaugural meeting went very well,” Sen reported. “We are all excited that the knowledge gleaned from Foundation-supported basic science research will soon start to be implemented in patient care.”
The MAB made numerous recommendations that we are now incorporating into our ongoing strategic planning process. Top among these recommendations was to create a centralized registry to track chordoma patients over time and determine how various treatments affect patient outcomes. This registry will allow us to learn from patient experiences regardless of where they are treated and will allow physicians everywhere to pool knowledge and learn from one another.
“Because there are so many variations among chordoma tumors, we know that we must tailor treatment based on each patient’s individual situation,” added Sen. Our goal is to develop standards for diagnosis and treatment so that all chordoma patients, wherever they are, can receive the appropriate treatment and support.”
In addition to providing strategic guidance, the MAB will play an ongoing role in vetting and overseeing our investments in clinical research and community services. Meanwhile, the Scientific Advisory Board will continue to help guide the Foundation’s ongoing laboratory research efforts.
Inaugural Medical Advisory Board Members
| Tom DeLaney Radiation Oncologist Massachusetts General Hospital | Ziya Gokaslan Spine Surgeon Johns Hopkins |
| Mrinal Gounder Medical Oncologist Memorial Sloan Kettering | Fran Hornicek Spine Surgeon Massachusetts General Hospital |
| Shreyas Patel Medical Oncologist MD Anderson | Chandra Sen (Board Chair) Skull Base Surgeon New York University |
| Silvia Stacchiotti Medical Oncologist Istituto Nazionale dei Tumori | Katie Thornton Medical Oncologist Johns Hopkins |
| Josh Yamada Radiation Oncologist Memorial Sloan Kettering |