Chordoma Foundation

Tumor Donation Program

If you have questions about donating tumor tissue, please contact us at: (877) 230-0164 or tumordonation@chordoma.org.

You can enable research by donating tissue

The first steps of research in any type of cancer are done in a lab. Some of the basic materials scientists need for their research can only be created from human tumor tissue. Lack of chordoma tumor tissue poses a major challenge to creating these materials and advancing chordoma research. One critical way patients can help overcome this challenge is by donating tumor tissue to the Chordoma Foundation Biobank through our Tumor Donation Program.

Susan Garbett“I was informed that the tumor tissue I donated had been used to develop a new chordoma cell line, one of the first-ever created and that my cell line was enabling a slew of research discoveries that would not have been possible otherwise.”

– Susan Garbett, sacral chordoma survivor

Learn more about Susan’s experience with tissue donation and how this has helped advance chordoma research »

 

What is the Biobank?

The Chordoma Foundation Biobank is a centralized repository of tumor tissue and blood samples contributed by chordoma patients to help advance research. Our Biobank protects and preserves these samples and makes them available to qualified researchers interested in studying chordoma. A single sample sent to our Biobank may be divided and shared among several different labs to support multiple research studies. Additionally, our 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 of your surgery as possible. Our Repository Manager, Patty Cogswell, will discuss the process of donating tumor tissue with you and answer any questions you have. Once you sign papers giving us your permission to do so, we will contact your surgeon and make all the arrangements to collect tissue remaining from your procedure that is not needed for your care.
  • Tell your surgeon that you want to donate your tumor tissue through the Chordoma Foundation Tumor Donation Program. Your surgeon can help by encouraging the hospital staff to work with our research 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 and add it to our Biobank.

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 can work with you to arrange a legacy tissue donation that minimizes disruption and brings meaning to a difficult time.

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 more than 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 our 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

Patient Navigation ServiceRequest help

If you are interested in donating tissue through our Tumor Donation Program and have questions about how to speak with your surgeon about donating, Chordoma Foundation Patient Navigators are here to assist you. Our Patient Navigators are available by email and phone, Monday through Friday from 8 AM to 5 PM ET.

Contact a Patient Navigator »

 

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