Recruiting

Observational Study

Sponsor:

National Cancer Institute (NCI)

Code:

NCT03910465

Conditions

Chordoma

Eligibility Criteria

Sex: All

Age: 2+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

Background:

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.

Objective:

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.

Eligibility:

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

Design:

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.

Conditions

Chordoma

Study ID

NCT03910465

Start date

Apr 16, 2019

Status verified date

Jun 1, 2026

Completion date

Dec 31, 2029

Anticipated

Primary completion date

Dec 31, 2029

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 2+

Healthy Volunteers: Not accepted

  • INCLUSION CRITERIA:
  • Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written consent document.
  • Subjects with radiographically or 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:

-None

Study Design

Enrollment

300 participants

Anticipated

Interventions and Outcome Measures

Arms

1/Cohort 1

Subjects with confirmed chordoma.

Primary outcome measure

  • To characterize the natural history of chordoma, including clinical presentation and patterns of disease progression [ Time Frame: 10 years ]

Central Contacts and Locations

Central contacts

Locations

National Institutes of Health Clinical Center

Recruiting

Bethesda, Maryland, United States, 20892

Contacts

For more information at the NIH Clinical Center contact National Cancer Institute Referral Office

888-624-1937

More Information

Sponsor

National Cancer Institute (NCI)

Last update posted

Aug 27, 2026

Last verified

Jun 1, 2026

Keywords

  • Rare Tumor
  • Comprehensive Evaluation and Recommendations
  • Collecting Clinical, Epidemiologic and Biological Data
  • Natural History

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by National Cancer Institute (NCI) on 2026-08-27.