Chordoma Foundation

For healthcare professionals

As a healthcare provider who treats chordoma patients, you play a major role in determining patient outcomes and are 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 you can 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 at info@chordoma.org. We are happy to help in any way we can.

Sign up to receive our emails so we can provide you with the latest on chordoma treatment and research advances, clinical trials, and resources for your patients.

Diagnosis & 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:

Additionally, the following pages on our website contain information relevant to the diagnosis and treatment of chordoma:

  • The Understanding chordoma and Diagnosing chordoma pages are a good starting point for those unfamiliar with chordoma.
  • Our Clinical Trials Catalogue lists trials open to chordoma patients, including both trials designed specifically for chordoma patients and other trials relevant to chordoma.
  • The Systemic Therapy Table identifies therapies that are relevant to chordoma treatment and are currently available through clinical trials or off-label prescription, as well as a summary of all published responses to systemic therapy. 
  • A list of therapeutic opportunities that includes targets that may be promising for chordoma as well as related molecular, preclinical, and clinical data.

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 and links to research can be found on the Chordoma in children and young adults page of our website.

Resources for your patients

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

Patient Navigation Service

Encourage your patients and their loved ones to contact our experienced Patient Navigators for free, personalized information, assistance finding expert care, and help getting connected to others in the chordoma community for support.

Educational materials

We produce a number of educational materials with information on diagnosis, treatment guidelines, and quality of life issues to help people make informed decisions about their care. You can request hardcopies to distribute to your patients, or encourage them to visit our website to access the materials themselves.

Finding care

Our Doctor Directory can help you and your patients locate providers with chordoma expertise, if needed.

The Survivorship Specialist Directory within our online community can help your patients find local specialists to address the medical, emotional, and social needs that may arise following chordoma treatment.

Peer support

If your patients are interested in connecting with fellow chordoma patients and caregivers, we offer multiple opportunities, including a private online community, Peer Connect program, and virtual support groups.

Educational events

We host virtual and in-person events to help patients and their loved ones learn about various aspects of chordoma including webinars and community conferences.

Helpful resources 

In addition to producing our own resources, we’ve put together a list of helpful resources including publications, tools, and resources including financial assistance, housing, general cancer resources, and more.

Questions to ask

Created by chordoma patients and caregivers, these lists of questions about diagnosis, treatment, and beyond are useful tools for patients currently exploring treatment options. 

Clinical trial information

The Clinical Trial Catalogue on our website lists all chordoma-specific trials, as well as trials we know to be enrolling and relevant to chordoma patients. The Clinical trials for chordoma page can help patients understand how trials work and think about when to explore them as a treatment option.

Improving quality of life

Chordoma treatment can leave patients and survivors dealing with numerous quality of life challenges. Our Chordoma Survivorship Initiative aims to help patients learn about treatment options for side effects and access the care they need to improve their quality of life.

Encouraging patient participation in research

Given chordoma’s rarity, every patient can play an outsized role in advancing research. Your help in educating patients about the importance of participating in research and about opportunities to do so can make a big difference. Below are important research opportunities to be aware of.

Natural History Study of Rare Solid TumorsChordoma is one of the rare tumor types of focus for this worldwide study currently underway at the National Cancer Institute (NCI) in the U.S. Including both retrospective and prospective data collection, the aims of this study are to better define the natural history of the disease, to identify clinical and biological correlates of outcome, and to generate new therapeutic hypotheses. 

Chordoma patients and survivors anywhere in the world and at any stage of treatment are able to enroll remotely and with minimal effort.  

Learn more about the Natural History Study of Rare Solid Tumors »

Tumor Donation Program: We make it easy for patients anywhere in the U.S. to contribute excess tumor tissue that would otherwise be discarded to the Chordoma Foundation Biobank for use by qualified researchers. Tissue can be collected prospectively and/or retrospectively. Viable tumor samples can also be collected for the development of disease models and this has enabled development of many of the models now available to the research community.

Supporting your research

We provide the chordoma research community with tools, resources, and opportunities to accelerate the pace of discoveries.

  • Clinical Trials Program supports well-justified signal-seeking trials for chordoma patients by assisting with trial design and accrual; financial support is also provided for investigator initiated trials. Research-enabling resources including biospecimens, disease models, ‘omic data, preclinical drug screening services and more are available to investigators worldwide. If your patients would like to donate tumor tissue, they can call (877) 230-0164 or email tumordonation@chordoma.org
  • Funding opportunities are available to support investigator-initiated research projects.
  • Research Workshops bring together a multidisciplinary group of leading chordoma physicians and scientists from around the world to share the latest discoveries about chordoma, discuss new treatment approaches, and forge collaborations with colleagues from different disciplines and institutions.

If you are interested in helping to develop new research resources or obtaining existing resources for your research, please contact researchteam@chordoma.org

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