Children and Adults With Chordoma

  • End date
    Dec 31, 2029
  • participants needed
  • sponsor
    National Cancer Institute (NCI)
Updated on 5 September 2023
ct scan



Chordoma is a rare type of bone cancer. It occurs in the skull base or spine. Researchers want to study people with chordoma in different ways. They hope this will help them design better future treatments and supportive care studies for this disease.


To learn more about chordoma by looking at its clinical course, how it appears on imagine scans, and how it responds to therapies and treatments.


People ages 2 and older with chordoma who are enrolled in NCI protocol 19-C-0016


Participants will be screened with their medical history.

Participants will have a visit to examine their disease. This will include:

  • Physical exam
  • Neurologic exam
  • CT scan and MRI: Participants will lie on a table. The table will slide into a machine. The machine will take pictures of the body.

Participants will have other tests every 6-12 months:

  • Smell test
  • Surveys to assess their emotional, physical, and behavioral well-being and needs
  • Cognitive function tests

Participants or their home doctors will be contacted every 6 12 months. They will be asked to provide information about their disease. This could include test results and imaging evaluations.

Some participants may be asked to come to the clinic for more visits.


  • Chordomas are a rare tumor with an incidence of 325 new cases per year in the United States. Pediatric chordomas are very rare and comprise only 5% of all chordoma cases.
  • The standard therapy for localized primary or recurrent chordomas is surgical resection. However, complete surgical resection is often not possible due to the location of the


-For chordomas that cannot be surgically resected, treatment options are limited. Currently,

no standard therapy approach exists for recurrent chordomas. In addition, there are no FDA approved medical therapies for chordoma.

  • The natural history of pediatric and adult chordoma is incompletely understood. Patients with chordoma seek expert advice in the management of their care.
  • The NCI has basic and clinical expertise and research interest in chordoma. The planned natural history study as part of the NCI POB Rare Tumor Patient Engagement Network (RTPEN) will allow for comprehensive evaluation and recommendations to these patients while longitudinally collecting clinical, epidemiologic and biological data.

-To characterize the natural history of chordoma, including clinical presentation and patterns of disease progression.

  • Subjects with histologically documented chordoma.
  • Age greater than or equal to 2 years old

-This protocol is a subprotocol to protocol 19-C-0016: Natural History and Biospecimen

Acquisition Study for Children and Adults with Rare Solid Tumors . After enrollment on the master protocol and undergoing evaluations detailed, patients will be enrolled on this subprotocol specific for chordoma.

-Medical histories will be documented, and patients followed throughout the course of their disease, with particular attention to patterns of disease recurrence and progression, response to therapies, duration of responses and patient reported outcomes. Tumor growth rates will also be calculated throughout the course of the disease.

Condition Chordoma
Clinical Study IdentifierNCT03910465
SponsorNational Cancer Institute (NCI)
Last Modified on5 September 2023


Yes No Not Sure

Inclusion Criteria

Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written consent document
Subjects with histologically documented chordoma
Age greater than or equal to 2 years old
Subjects must be enrolled into NCI protocol 19-C-0016: Natural History and Biospecimen Acquisition Study for Children and Adults with Rare Solid Tumors

Exclusion Criteria

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How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer  to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

Learn more

If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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