Natural History Study of Chordoma in Children and Adults Tracking Disease Progression and Treatment Responses

What this Trial Is About

Chordoma is a rare type of bone cancer that develops in the skull base or spine. This research aims to better understand chordoma by studying its clinical course, appearance on imaging scans, and response to therapies and treatments. The study includes both children and adults aged 2 years and older who have been diagnosed with chordoma and are enrolled in a related NCI protocol. Participants will undergo detailed evaluations including medical history documentation, physical and neurologic exams, and imaging scans such as CT and MRI to observe tumor characteristics. Additional tests like smell tests, cognitive function assessments, and surveys of emotional and physical well-being will be conducted every 6 to 12 months. Some participants may have extra clinic visits depending on their condition. Throughout the study, participants or their healthcare providers will be contacted regularly to collect updated disease information, test results, and imaging data. The researchers will closely follow disease progression, response to treatments, and patient-reported outcomes over time. The main goal is to characterize the natural history of chordoma over a period of up to 10 years, helping to guide future treatment and care approaches.

Children and Adults With Chordoma