Clinical trial Recruiting at 1 site Observational Ages 2 and up

Observing the natural history of chordoma in children and adults

Official title: Natural History Study of Children and Adults With Chordoma

Run by National Institutes of Health Clinical Center (CC) · NCT03910465 · Data updated 2026-11-12

This study is trying to learn more about how chordoma, a rare bone cancer, affects children and adults by tracking their health and treatment responses over time.

More Chordoma trials

Quick facts

Study typeObservational
Ages2 Years and up
SexAll
Enrollment300 (estimated)
SponsorNational Institutes of Health Clinical Center (CC)
NIH
Locations1 site (Bethesda, Maryland)
StatusRecruiting
StartedApril 16, 2019
Main results expectedDecember 31, 2029
Study endsDecember 31, 2029
Registry record updatedNovember 9, 2026
Trial IDNCT03910465 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates for this study are individuals aged 2 and older who have been diagnosed with chordoma.

Probably not a fit

Patients without a confirmed diagnosis of chordoma or those not enrolled in the NCI protocol 19-C-0016 may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to gather comprehensive clinical, epidemiologic, and biological data on chordoma, a rare bone cancer affecting the skull base or spine. Participants aged 2 and older with documented chordoma will undergo a series of evaluations, including physical and neurologic exams, imaging scans, and periodic assessments of their well-being. The goal is to better understand the disease's progression and response to treatments, ultimately informing future therapeutic strategies.

Why it matters

Potential benefit: If successful, this study could lead to improved treatment options and supportive care for patients with chordoma.

How similar studies have gone: While chordoma is a rare condition with limited treatment options, similar observational studies have provided valuable insights into other rare tumors, suggesting potential for success in this approach.

Who can join: the full rules

Show full inclusion / exclusion criteria
* 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".

EXCLUSION CRITERIA:

-None

Where it's running

  • National Institutes of Health Clinical Center
    Bethesda, Maryland, United States
    Recruiting

Study contacts

  • Principal investigator: Mary F Wedekind Malone, D.O. — National Cancer Institute (NCI)
  • Study coordinator: Barbara J Thomas, R.N.
  • Email: barbara.thomas2@nih.gov
  • Phone: (240) 858-3633

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.