Children and Adults With Chordoma

  • End date
    Dec 31, 2029
  • participants needed
  • sponsor
    National Cancer Institute (NCI)
Updated on 11 May 2020
BJ Thomas, R.N.
Primary Contact
National Institutes of Health Clinical Center (9.7 mi away) Contact
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.

Clinical Study IdentifierNCT03910465
SponsorNational Cancer Institute (NCI)
Last Modified on11 May 2020

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Inclusion Criteria

Is your age greater than or equal to 2 yrs?
Gender: Male or Female
Do you have any of these conditions: Germ Cell Tumors or Chordoma or Germ cell tumor?
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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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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