Natural history studies compile information from a large number of patients to better understand the “history” of a disease over a long period of time. This study will provide us with a comprehensive, detailed understanding of the natural course of chordoma from the time it forms, to when it first causes symptoms, and through every clinical stage after that.
Researchers with the My Pediatric and Adult Rare Tumor (MyPART) Network at the U.S. National Cancer Institute (NCI) are currently enrolling chordoma patients in the Natural History Study of Rare Solid Tumors. Clinical and biological information collected by the study, including tumor tissue samples, will provide a better understanding of how chordomas develop and grow, and how we can more effectively treat them.
Why this study is important
Knowledge of the natural history of chordoma is critical to the process of getting treatments approved for chordoma. Researchers will use data from this natural history study to gain new insights into the biology of chordoma and develop treatments that are more tailored to chordoma. Additionally, we must be able to demonstrate that new treatments change the natural history of chordoma in order for them to be approved — having this baseline data will make it possible to meaningfully assess the effect of new treatments in clinical trials.
Who can participate
Chordoma patients and survivors anywhere in the world and at any stage of treatment — before, during, or after — are able to enroll. Because this is an informational study and not a treatment study, participants are not required to visit the National Institutes of Health (NIH) Clinical Center in person. Pediatric patients over the age of 1 year can be enrolled in the study by their parent or guardian.
How the study works
Once you send an initial email to the study team to learn more about the study, they aim to respond to you within 24-48 hours. As with all clinical studies, there is a screening process you must go through before you enroll. The team at NCI will collect certain medical records, provide you with more information about the study, answer any questions you may have, and then inform you of your rights as a study participant (informed consent).
See “What can I expect while participating in the study?” from FAQs below for details about the process after you enroll.
If you have more questions about this study or other clinical trials that may be options for chordoma patients, please contact a Chordoma Foundation Patient Navigator.