Chordoma Foundation

Tumor Donation Program

Contact us with questions

(877) 230-0164

tumordonation@chordoma.org

Donate tissue

Researchers need models of chordoma to make discoveries that will lead to new treatments and, ultimately, a cure for chordoma. However, lack of chordoma tissue poses a major challenge to creating these models and advancing chordoma research. One important way patients can help overcome this challenge and expedite chordoma research is by donating tissue to the Chordoma Foundation Biobank through our Tumor Donation Program.

What is the Biobank?

The Chordoma Foundation (CF) Biobank is a centralized repository of tumor tissue and blood contributed by chordoma patients to help advance research. The CF Biobank protects and preserves these samples and makes them available to qualified researchers interested in studying chordoma. A single sample sent to the Biobank may be divided and shared among several different labs to support multiple research studies. Additionally, the CF Biobank collects clinical information from chordoma patients to enable research into factors that affect treatment and outcomes.

Download Biobank flyer (PDF) »

How to contribute

If you have an upcoming surgery

  • Contact us at (877) 230-0164 or tumordonation@chordoma.org as far in advance as possible. We will make arrangements with the hospital to collect tissue remaining from your procedure that is not needed for your care.
  • Tell your surgeon that you want to contribute tissue to the Biobank. Your surgeon can help by encouraging the hospital staff to work with our Biobank team to make sure your tissue is saved and can be used for research.

If you had surgery in the past

  • Tissue from a previous surgery might be stored at the hospital where you were treated. Let us know when and where you had surgery, and we will attempt to locate and obtain this tissue.

If you would like to plan a legacy tissue donation

  • Many patients find that planning a posthumous legacy tissue donation is empowering and provides comfort, knowing they are contributing to a better understanding of chordoma and bringing hope to others. Our staff works with you to arrange a legacy tissue donation that minimizes disruption and brings meaning to a difficult time. To learn more, click here to read about one family’s experience with legacy tissue donation or call us at (877) 230-0164.

Biobank Consent Form – Adult (PDF) »

Biobank Assent Form – Minor (PDF) »

If you have questions about these forms, please contact Patty Cogswell at (877) 230-0164. Completed forms can be emailed to tumordonation@chordoma.org.

Participating hospitals

Each chordoma tumor is valuable for research, so we will make every effort to collect tissue from any hospital in the United States. At the request of chordoma patients, we have successfully obtained tissue from over twenty different hospitals. However, please be aware that there are some hospitals and situations in which it will not be possible for us to obtain tissue. Currently, participation in our Tumor Donation Program is only possible for patients who have surgery in the United States.

Partner sites

The following hospitals have partnered with the Chordoma Foundation to routinely contribute chordoma tissue to the Biobank. We appreciate the cooperation and dedication of the surgeons, pathologists, and staff at these hospitals whose efforts ensure that precious chordoma tissue gets saved and used for research.

Frequently asked questions