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Acronyms and

Frequently Asked Questions

If you have additional questions about the Children's Brain Tumor Network that are not listed below, please contact us to learn more.

Participate through Sample Donation

Who donates tissue to the CBTN?

People from all backgrounds and communities donate to the CBTN.

How do I donate samples?

If your child has been diagnosed with a brain tumor and is currently being treated at one of our institutions, he or she may be eligible to make a donation to the CBTN. Please ask your child’s doctor for more information. Your child’s physician can describe the donation process, obtain your consent to donate samples, and answer any additional questions.

If your child is not currently being treated at one of the CBTN member institutions, he or she may still be able to contribute a sample to the CBTN. To request an out-of-network donation, please contact a member of our research team via email (info@cbtn.org) and we will follow up to clarify any questions and coordinate the donation.

We extend our heartfelt gratitude to the many generous and committed donor constituents who have supported the CBTN initiative. Together we are making pioneering progress in pediatric brain tumor research.

What are samples?

The samples (biospecimens) the CBTN collects include all types of childhood brain tumor tissue samples and, if available, blood or saliva from the patient and their parents.

Can we see the results of the research in the future?

Updates about each research study are displayed here on the CBTN's website

Does this research find out if there is cancer?

The pathology department is responsible for determining the condition of the disease (if tumor is benign or malignant). Once a diagnosis is confirmed, that information is relayed to your doctor who will review the results. The CBTN research is not part of your child’s diagnosis process.

What will happen to the samples and information collected?

The samples and information will be stored at the CBTN's operations center, located at Children’s Hospital of Philadelphia (CHOP). All information that identifies the donor is removed. The de-identified samples and information are then used by researchers across the world.

What if we need the extra tissue for future clinical use?

The tissue submitted to the CBTN is only what is remaining after the tissue collected from a biopsy or resection is used for the child’s care. Many families give permission for these unused portions of tissue to be submitted to the CBTN in the hope that new knowledge might help other patients in the future.

How are samples used?

Scientists use the tissue samples to study how the tumor works by looking at its genes and proteins. These specimens play a critical role in our emerging understanding of how these tumors work. For example, studying samples from breast cancer patients helped researchers create a test to identify breast cancer types, create new treatments, and customize treatments. Samples can be used to create cellular-based models for testing of new and more effective treatments for childhood brain tumors.

How will my privacy be protected?

Your privacy is our highest priority. Any biospecimens donated to the CBTN will not have any information that can be linked to you or your family.

How do we know if there are genetic links found? Can you let us know if there are?

Families can learn about genetic links from the published findings of CBTN research projects. Patient families can consult with their doctor about participating in a clinical trial. Unfortunately, we cannot contact patients and families to provide results due to confidentiality restrictions.

Understanding Data Access & Research Resources

If you have questions related to CBTN data or requesting CBTN research resources, please visit the Research Resources FAQ section on the CBTN website. You may also download the CBTN acronym dictionary of key research acronyms and terms.