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Non-Familial Chordoma Participation Information

What Does Participation in the Non-Familial Chordoma Study Involve?

Those who choose to participate in the Non-Familial Chordoma Study will be asked to:

  • Provide a saliva sample as a source of DNA for genetic studies on chordoma or related cancers;
  • Provide personal medical and family history information by completing a self-administered questionnaire; and
  • Give us permission to obtain past medical records about chordoma, and a small piece of chordoma that was stored after surgery.

People will be able to participate in this study from their homes. After they have contacted us to ask about this study, if they are interested in learning more about it, we will send them a letter that describes the study in more detail. We will then telephone them to determine whether they wish to participate in the research. If they decide to participate, we will mail a package to their home that contains all of the materials needed for the study. The package includes the study consent form, the personal and family medical history questionnaire, and the kit that contains a special plastic cup and a lid for using to collect a saliva sample. After they have signed the consent form, completed the questionnaire and collected the saliva sample, they can mail these back to us in a pre-addressed postage-paid envelope included in the package.

We will provide participants with the overall findings of the study when analysis of information from the study is completed.

Based on information we learn about a participant’s personal or family medical history or from the laboratory tests done on DNA from the saliva or chordoma samples, we may re-contact a participant and invite him/her, and possibly ask them to contact their close relatives, to participate in a separate clinical study related to the development of chordoma. If we re-contact people about the clinical study, they can decide at that time whether they want to participate in it.

The researchers conducting this study and the NIH follow applicable laws and policies to keep your identifying information private to the extent possible. To help us protect your privacy, the NIH Intramural Program has received a Certificate of Confidentiality (Certificate). With this Certificate, researchers may not release or use data or information about you except in certain circumstances.

Who is Eligible to Participate in the Non-Familial Chordoma Study?

To participate in the Non-Familial Chordoma study, a person must be:

  • the only individual in his/her extended family diagnosed with chordoma, and
  • at least 6 years old.

If the individuals with chordoma are between the ages of 6 and 17 years of age, a parent can serve as a proxy for them and complete the personal and family medical history questionnaire. A parent may also help them collect the saliva sample.

How to Contact Us about the Non-Familial Chordoma Study

If only one person in your family has ever been diagnosed with chordoma and you are interested in contributing to research on non-familial chordoma, please email our research team or call toll-free 1-800-518-8474.

For more information about the Non-Familial Chordoma study, contact Alisa Goldstein, Ph.D. or Rose Yang, Ph.D., M.P.H.

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