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.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 2 Years and up |
| Sex | All |
| Enrollment | 300 (estimated) |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Locations | 1 site (Bethesda, Maryland) |
| Status | Recruiting |
| Started | April 16, 2019 |
| Main results expected | December 31, 2029 |
| Study ends | December 31, 2029 |
| Registry record updated | November 9, 2026 |
| Trial ID | NCT03910465 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
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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.
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Combination treatment of pembrolizumab and high-dose pemetrexed for chordoma
This study is testing a new combination of two drugs, pembrolizumab and high-dose pemetrexed, to see if it can help people with progressive chordoma, a rare cancer.
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Alpha/beta T‑Cell and B‑Cell Depletion plus Zoledronic Acid for Pediatric and Young Adult Solid Tumors
This study will try removing alpha/beta T cells and B cells from donor stem cell grafts and giving zoledronic acid to see if it helps children and young adults (6 months to 25 years) with relapsed or high‑risk solid tumors tolerate allogeneic transplant and reduce relapse.
-
Comparing single vs double beam proton therapy for certain tumors
This study is testing whether using one beam of proton therapy is just as effective and safer than using two beams for patients with certain types of tumors.
-
Proton therapy for chordomas and chondrosarcomas at the skull base
This study is testing a new type of proton therapy to see if it can effectively treat chordomas and chondrosarcomas at the base of the skull while keeping side effects low and improving patients' quality of life.
-
Comparing carbon ion therapy, surgery, and proton therapy for pelvic bone sarcomas
This study is testing whether carbon ion therapy works better than surgery or proton therapy for treating pelvic bone sarcomas and how these treatments affect patients' quality of life.
-
Using imaging to improve proton therapy for chordomas and chondrosarcomas
This study is testing if using advanced imaging techniques can help improve proton therapy for patients with aggressive bone tumors called chordomas and chondrosarcomas by better targeting the tumors and protecting healthy tissue.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.