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Observational Study for Children and Adults with Chordoma

This study is looking to understand more about chordoma, a rare type of bone cancer that can occur in the skull or spine. Researchers want to learn about how chordoma develops and progresses over time. They will do this by observing people with chordoma, collecting information about their medical history, how their disease appears on scans, and how it responds to treatments. The goal is to gather information that can help design better treatments and care in the future. You can join if you are 2 years or older, have a confirmed diagnosis of chordoma, and are already enrolled in another NCI study (protocol 19-C-0016). The study aims to follow participants for 10 years to understand the natural course of the disease.

Study design
This is an observational study, meaning researchers will collect information without giving any new treatments. It plans to enroll up to 300 participants.
What's involved
You will have a visit for a physical exam, a neurologic exam, and imaging scans (CT and MRI). Your medical history will also be reviewed.
Compensation
Not stated in the trial record.
Follow-up
The study aims to characterize disease progression over 10 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03910465

Children and Adults With Chordoma

Recruiting
Not specifiedAges 2+Observational
National Cancer Institute (NCI)
~300 participants
Updated 2026-08-27 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
To characterize the natural history of chordoma, including clinical presentation and patterns of disease progression
Measured over 10 years

Conditions

Chordoma

Explore related trials

Chordoma

NCT03910465

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • National Institutes of Health Clinical Center

    Bethesda, Marylandstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Mary F Wedekind Malone, D.O. · PRINCIPAL_INVESTIGATOR · National Cancer Institute (NCI)

Who to contact

Barbara J Thomas, R.N.
[email protected]
(240) 858-3633
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

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Eligibility criteria

Inclusion

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

None

What this trial measures

  • To characterize the natural history of chordoma, including clinical presentation and patterns of disease progression10 years

    Natural history of chordoma, including clinical presentation and patterns of disease progression