Photo: Marshall Brady
We’re excited to share an important new opportunity for chordoma patients, particularly those treated at Mass General Hospital.
If you’ve been treated at Mass General Hospital:
If you received any part of your chordoma treatment at Mass General Hospital (MGH) or the Harvard Cyclotron Laboratory (now the Francis H. Burr Proton Therapy Center) after 1980, researchers at MGH would like to hear from you.
Dr. Myrsini Ioakeim-Ioannidou has launched a new research project to better understand how treatment choices affect survival and long-term quality of life. By sharing your experience, you can help answer key questions, such as:
Which treatment combinations lead to the best outcomes—for example, surgery alone vs. surgery plus radiation?
How are patients and survivors doing 5, 10, or 15+ years after treatment?
What long-term side effects do patients face, such as changes in mobility, bowel and bladder function, pain, speech, or swallowing?
To participate, email Dr. Myrsini Ioakeim-Ioannidou. She’ll follow up to schedule an in-depth interview about your treatment experience and recovery.
Whether you were treated at MGH recently or years ago, sharing your experiences with their team can provide powerful insights into what’s working, what’s not, and how care can be optimized for those who come next.
If you've been treated for chordoma at ANY center:
We want to hear from you, too!
We’re working to better understand where chordoma patients receive care so we can share relevant research opportunities with you as they become available.
Please take a moment to fill out this short form and let us know where you were treated:
By participating in these and other efforts, you're helping the chordoma research community work toward better treatments and outcomes. We’re deeply grateful for your contributions to progress!