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Healthcare professionals

We provide information and resources for managing chordoma, assisting your patients, and advancing research.

How we can support you

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.

Diagnosis and treatment

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.

Guidelines from the Chordoma Global Consensus Group

Guidelines from oncology societies

The following pages of our site may also be helpful to you:

Understanding chordoma

The basics on chordoma including incidence and prevalence, tumor locations, and subtypes.

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Getting a diagnosis

Symptoms, imaging recommendations, and biopsy guidelines.

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Drug therapy options

Therapies scientifically relevant to chordoma that are available off-label or through a clinical trial.

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Chordoma in children and young adults

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.

More information

Resources for your patients

When you diagnose or treat someone with chordoma, they'll have a lot of questions. We can help!

Patient navigation

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.

Learn more

Educational materials

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.

Check out our educational materials

Finding care

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.

Find a doctor

Clinical trials

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.

Quality of life

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.

Survivorship resources

Educational events

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.

Learn more

Subscribe for more resources and opportunities

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.

Supporting your research

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:

  • A clinical trials program, which supports well-justified, signal-seeking trials for chordoma patients. We can assist with trial design, accrual, and financial support for investigator-initiated trials.
  • Research-enabling resources, including data, models, biospecimens, drug screening services, funding opportunities, and more.
  • International Chordoma Research Workshop, coming up July 13-14 in Boston. The event provides a unique opportunity for you to connect with colleagues, exchange the latest findings and ideas, and collectively shape the future of chordoma research and treatment.

If you have questions about or ideas for research, contact us.

Encouraging patient participation in research

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:

  • Natural history study. Chordoma is one of the rare tumor types of focus for the U.S. National Cancer Institute's Natural History Study of Rare Solid Tumors. Including both retrospective and prospective data collection, the study aims to better define the natural history of the disease, identify clinical and biological correlates of outcome, and generate new therapeutic hypotheses. Chordoma patients anywhere in the world and at any stage of treatment are able to enroll remotely and with minimal effort.
  • Tumor donation. Our research team makes it easy for patients to contribute tumor tissue to scientists around the world. Tissue can be collected prospectively and retrospectively. Currently, we have a particularly urgent need for tumor tissue from pediatric and young adult patients, and poorly differentiated and de-differentiated tumor samples.
  • Clinical trials. Our Systemic Therapies List can assist you in identifying trials that could help your patients.

Invest in a cure

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.