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Researchers need chordoma tissue 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 advancing chordoma research. One important way that patients can help overcome this challenge and expedite chordoma research is by donating tissue to the Chordoma Foundation Biobank.
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 Brochure (PDF)
How to contribute
If you have an upcoming surgery
- Contact us at (877) 230-0164 or email@example.com 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 Consent Form – Minor (PDF)
If you have questions about these forms, please contact Patty Cogswell at (877) 230-0164. Completed forms can be emailed to firstname.lastname@example.org.
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 the Biobank is only possible for patients who have surgery in the United States.
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 get saved and used for research.
- Barrow Neurological Institute / St. Joseph’s Hospital
- University of California San Francisco
- University of North Carolina at Chapel Hill
- University of Pittsburgh Medical Center
Frequently asked questions
Does it matter when I contact the Chordoma Foundation?
Yes. The sooner you contact us, the more likely we will be able to obtain your tissue. If you contact us before surgery we can work with your hospital to ensure that your tissue is saved in such a way that it is most useful for research. Otherwise, your tissue may not be made available for chordoma research.
Will contributing to the Biobank affect my care?
No. Your safety and health always come first. No additional tissue will be removed surgically as a result of your participation in the Biobank. Only tissue not needed for diagnosis or care (tissue which would otherwise be discarded) will be used for research.
Will I learn about results of research performed on my tissue?
No. Tissue contributed to the Biobank is for research purposes only. Results generated from this tissue are experimental in nature and should not be relied upon for medical care.
What about privacy?
Your privacy is very important to us. To protect your privacy, each tissue sample sent to the Biobank is labeled with a unique identification number and any personal information is removed. Researchers only see these identification numbers so they never know the identity of the patients whose samples they receive.
Will I benefit from contributing to the Biobank?
Research conducted with your information and specimens will likely not help you directly, but it may help people in the future. Research performed with your information and specimens could result in the discovery and development of new drugs, tests or other commercial products. Patients will not be given any compensation for such discoveries or commercial products.