Observing the natural history of chordoma in children and adults
Natural History Study of Children and Adults With Chordoma
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 |
|---|---|
| Enrollment | 300 (estimated) |
| Ages | 2 Years and up |
| Sex | All |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Locations | 1 site (Bethesda, Maryland) |
| Trial ID | NCT03910465 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals aged 2 and older who have been diagnosed with chordoma.
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.
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 performed: 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.
Eligibility criteria
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 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 CRITERIA: -None
Where this trial is running
Bethesda, Maryland
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.