Skip to Main Content

Tumor Donation Program

You can enable chordoma research by donating tumor tissue

  1. Resources
  2. Tumor donation program

What is the Tumor Donation Program?

Patient tumor tissue is a critical ingredient in researchers’ quest to unlock new discoveries about chordoma. For example, it allows scientists to study how chordoma forms, and enables the creation of essential materials and research tools scientists need to conduct early testing of potential therapeutic strategies in chordoma. The availability of tumor tissue representing the full diversity of chordoma therefore provides a major opportunity to advance chordoma research.

One critical way patients can fuel chordoma research is by donating tumor tissue to the Chordoma Foundation Biobank through our Tumor Donation Program.

By studying chordoma tumor samples, scientists can learn more about chordoma and how to treat it. We're currently accepting tumor donations from all chordoma patients, with priority for the following:

  • Pediatric, adolescent, and young adult chordoma patients (under 35 years of age)
  • Chordoma patients of any age who have poorly differentiated or de-differentiated subtypes of chordoma

What is the Biobank?

The Chordoma Foundation Biobank is a centralized repository of tumor tissue and blood or saliva 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, including for research being conducted by Chordoma Foundation Labs.

A single tumor 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.

How to contribute tumor tissue

Let us know you're interested in donating tumor tissue by completing this form.

If you'd like more information about the program before completing the form, call (919) 809-6779 ext. 133 or email our tumor donation team.

Currently, participation in our Tumor Donation Program is only possible for patients who have surgery in the United States.

If you have an upcoming surgery

Contact us as far in advance of your surgery as possible by completing the form linked below. 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.

Go to form

If you had surgery in the past

Tissue from a previous surgery might be stored at the hospital where you were treated. Fill out the information form linked below to 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.

Go to form

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

Email us


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.

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.


Another way to advance chordoma research

Another way to help further chordoma research is to join the Natural History Study of Rare Solid Tumors being conducted at the National Cancer Institute.

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.

Contact a Chordoma Foundation Patient Navigator

Chordoma Foundation Patient Navigators provide personalized information and support to anyone affected by chordoma, anywhere in the world, at any stage of their journey. Your Patient Navigator will use their extensive knowledge of chordoma to help answer your questions, provide information about treatment guidelines, help you find qualified doctors, talk with you about side effects, and connect you with others in the chordoma community who have been through a similar journey.