Chordoma: Current status, problems, and future directions.
Mary Frances Wedekind, Brigitte C Widemann, Gregory Cote
https://pubmed.ncbi.nlm.nih.gov/34266694Actively Recruiting
Age: 2Years +
All Genders
ID03910465
Natural History Study of Children and Adults With Chordoma
Led by National Cancer Institute (NCI) · Updated on 2026-06-05
300
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Chordoma is a rare type of bone cancer that occurs in the skull base or spine. Researchers want to better understand chordoma by studying its clinical course, appearance on imaging scans, and how it responds to different therapies. This natural history study focuses on children and adults with chordoma to help design improved treatments and supportive care in the future. Participants must have a confirmed diagnosis of chordoma and be enrolled in the NCI protocol 19-C-0016 for rare solid tumors. The study involves documenting medical histories and following participants over time to observe disease progression, patterns of recurrence, responses to therapies, and tumor growth rates. This study does not involve new treatments but collects detailed clinical, epidemiologic, and biological data. During the study, participants have visits to assess their disease, including physical and neurologic exams, CT scans, and MRIs. Every 6 to 12 months, participants complete tests such as smell tests, surveys about their emotional and physical well-being, and cognitive function assessments. Researchers also gather ongoing information about disease status from participants or their doctors. Some participants may be asked to attend additional clinic visits. The main outcome measured is the natural history of chordoma over 10 years, focusing on clinical presentation and disease progression.
CONDITIONS
Brief Title
Children and Adults With Chordoma
Who Can Participate
Age: 2Years +
All Genders
Eligibility Criteria
You may qualify if you...
- 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 .
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
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Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Long-term Monitoring
Duration - Up to 10 years
Participants with chordoma are followed throughout the course of their disease to document medical histories, patterns of disease recurrence and progression, response to therapies, duration of responses, and patient reported outcomes.
Trial Site Locations
Total: 1 location
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
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Research Team
B
Barbara J Thomas, R.N.
M
Mary F Wedekind Malone, D.O.
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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