Long-term study following children and adults with chordoma, a rare bone cancer
Follows people with chordoma over time through scans, exams and tests.
Plain-language title generated from the registry record
Registry title: Children and Adults With Chordoma
Key facts
- Where
- Bethesda, United StatesSee the site
Where in United States
- National Institutes of Health Clinical CenterBethesda, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- National Cancer Institute (NCI)
- Trial code
- NCT03910465
- Record updated
- 9 November 2026
- Original description
Background:Read full original descriptionShow less
Natural History Study of Children and Adults With Chordoma
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.
Exclusion: -None.
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 >= 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".