We provide information and resources for managing chordoma, assisting your patients, and advancing research.
As a healthcare provider who treats chordoma patients, you play a major role in optimizing patient outcomes, and you're critical to our efforts to advance chordoma research.
On this page you’ll find:
Information to help you effectively diagnose and treat chordoma
Valuable resources to provide to your chordoma patients and their loved ones
Opportunities to participate in efforts to advance chordoma research and treatment development
If you have questions about something you see here or need answers to something you don’t, please contact us. We are happy to help in any way we can.
Chordoma is sometimes misdiagnosed and is often complex to manage, requiring highly specialized care. You may find the following resources helpful to learn more about chordoma diagnosis and treatment.
Building a global consensus approach to chordoma: a position paper from the medical and patient community contains the first consensus guidelines on diagnosing and treating primary chordoma, published in The Lancet Oncology. A patient-friendly version of the guidelines is available on the New Diagnosis page of our website and in our Expert Recommendations for the Diagnosis and Treatment of Chordoma booklet.
Best practices for the management of local-regional recurrent chordoma: a position paper by the Chordoma Global Consensus Group was subsequently published in Annals of Oncology and, in addition to guidelines for local recurrence, contains brief guidance on advanced and metastatic disease. Patient-friendly versions are available on the Local recurrence and the Advanced disease pages of our website and in our Expert Recommendations for the Treatment of Recurrent Chordoma booklet.
NCCN Clinical Practice Guidelines in Oncology: Bone Cancer (requires NCCN login)
Chordoma is very rare in patients under the age of 18. However, this age group — as well as young adults — is more commonly affected by the poorly differentiated subtype than are older adults. Poorly differentiated chordoma is characterized by loss of INI1 (SMARCB1; SNF5). Thus, the Chordoma Foundation Medical Advisory Board suggests that chordoma patients under 35 years of age have their tumors tested for INI1, either through IHC or genomic testing. Additionally, systemic therapy may be appropriate for poorly differentiated chordoma in conjunction with surgery and/or radiation.
Chordoma: current concepts, management, and future directions (Lancet Oncol. 2012)
Clival chordomas: A pathological, surgical, and radiotherapeutic review (Head Neck. 2014)
Management of chordoma of the sacrum and mobile spine (Orthop Traumatol Surg Res. 2022)
Medical treatment of advanced chordomas (Eur J Cancer. 2017)
When you diagnose or treat someone with chordoma, they'll have a lot of questions. We can help!
Encourage patients and caregivers to contact our experienced Patient Navigators for free, personalized information, assistance finding expert care, and help getting connected to support from others affected by chordoma.
In addition to our website, our downloadable educational materials have info on diagnosis, treatment, and quality of life issues to help people make informed decisions. You can request hardcopies to distribute to your patients or encourage them to visit our website to access the materials themselves.
Our Doctor Directory can help you and your patients locate providers with chordoma expertise if needed. Additionally, the Survivorship Specialist Directory within our online community can help patients find local specialists to address the medical, emotional, and social needs that may arise following chordoma treatment.
The Systemic Therapies List on our website includes all therapies relevant to chordoma based on clinical and preclinical evidence and provides links to clinical trials studying those drugs that are open to chordoma patients.
Chordoma treatment can pose numerous quality of life challenges. Our information can help patients learn about treatment options and access the care they need to manage side effects.
We host virtual and in-person events to help patients and their loved ones learn about various aspects of chordoma and connect with their peers.
Sign up for our newsletter to stay up to date about resources available to your patients, hear about the latest advances in research and treatments, and be notified about opportunities to connect with other professionals in the field.
We're grateful to the healthcare providers working to advance chordoma research, and we're eager to help you accelerate the pace of discoveries.
Some of the tools, resources, and opportunities we provide include:
If you have questions about or ideas for research, contact us.
Given chordoma’s rarity, every patient can play an outsized role in advancing research.
Your ability and willingness to educate patients about the importance of research participation can make a big difference in improving future patient outcomes. Opportunities for patients to participate in research include:
Gifts to the Chordoma Foundation accelerate cures for chordoma patients and provide hope families facing this disease today. You can even dedicate your donation in honor or memory of a patient. Thank you for being part of our shared quest for better treatments and outcomes for chordoma patients.
