Those who choose to participate in the Familial Chordoma Study will be asked to:
Blood for the research can be drawn by a participant’s own physician or at a local laboratory and mailed to us. The other activities can be carried out in a participant’s home.
In addition, individuals from some chordoma families may be invited to the Clinical Center of the National Institutes of Health (NIH), in Bethesda, MD, to participate in clinical studies. These studies include having a physical examination and donating blood for research; they may also include undergoing magnetic resonance (MR) imaging studies of the base of the skull and entire spine. Results of the clinical studies will be discussed with the participants before they return home and given to them to share with their primary doctors.
Participants and family members will be able to ask questions and stay in touch with the research team. Participants will be asked to complete a yearly follow-up form to update medical information. We will provide participants with the overall findings of the study when analysis of information from the study is completed.
This study has been reviewed and approved by the Institutional Review Board (IRB) of the NCI. NCI is required by Federal law not to reveal any personal information that is collected from study participants to anyone other than persons directly involved with the study. A system is in place to ensure your privacy; in addition, all information obtained as part of this research is protected from disclosure by a Certificate of Confidentiality issued by the NCI.
NCI will pay for all clinical studies done at the NIH Clinical Center and for travel to and from Bethesda, MD, for participants.
Treatment is not offered as part of this study. However, if the need arises, we will discuss treatment options with participants. We will also provide assistance in establishing care with appropriate physicians as needed. Study participants will remain under the care of their primary doctors while participating in the study.
To participate in the Familial Chordoma study, a family must have the following:
Family members who are eligible to participate include those with chordoma, and their parents, siblings and children. We may also invite other blood relatives to join the study if they are genetically linked to family members with chordoma.
In addition, if children who have a parent with chordoma participate, we may invite their unaffected parent to join the study.
If your family has two or more blood relatives who have been diagnosed with chordoma and you and other family members are interested in contributing to research on familial chordoma, please complete and submit the Familial Chordoma study form. A research nurse will get back to you in a few days. This information is not on a secure server, so if you prefer, you can call toll-free 1-800-518-8474 and ask to speak with Ms. Stephanie Steinbart about the Familial Chordoma Study. She is a research nurse who can answer your questions and provide additional information about this study.