Frequently Asked Questions

What is the cost to donate specimens/data?

The cost associated with the donation of specimens or data by patient families is covered by the CBTN. CBTN receives financial support from individuals, foundations, institutions, and other sources to cover the operational expense of gathering biospecimen and data resources; to be shared, at no cost, with researchers around the globe. To support us in this effort, visit our donation page.

Who donates tissue to the CBTN?

People from all backgrounds and communities donate to the CBTN.

Why collect tissue samples? What can we learn? Why is it important to have as many as we do?

Pediatric brain tumors are rare despite being the number one cause of cancer related death in children. It’s important to collect tumor tissue in order to understand the biology of brain tumors and find existing therapies approved for other cancers or develop new ones to help our children. As there are over 125 types of brain tumors, with new subtypes being discovered, it’s important to continue to collect these tumors for research. They are a precious yet depletable resource for researchers. The more we collect, the more researchers we can assist.

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, they 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 (research@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.

Why collect saliva, spinal fluid, blood/plasma, and other fluids, as well as samples from family members? What do we learn from biosamples collected from a patient’s family members?

Saliva and blood from the patients as well as family members help to inform on genetic variations that already existed, passed genetically from parents, versus variations that were as a result of the tumor. This information can help to inform how a patient might respond to a particular treatment.

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

Updates about each research study are displayed here.

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.

CBTN collects post-mortem brain tissue, but why? What makes brain tissue collected from a patient after they have passed on so valuable to pediatric brain tumor research?

Collecting from patients after they have passed provides a number of opportunities for researchers that can’t be done normally. For example, samples of normal brain tissue can be obtained in addition to the tumor to begin understanding the changes that took place for the tumor to grow. Additionally, there are some tumors that are inoperable based on the location where it’s growing. Finally, it’s known that tumors can undergo molecular changes, especially those that are inoperable after an initial biopsy. Understanding these changes that are either occurring naturally or from treatment will assist researchers with development of targeted treatments.

What can a researcher find in Cavatica? What types of discoveries can it lead to?

Cavatica is an online portal used by researchers to access and analyze data raw sequencing data. In usual settings, data scientists need to have the data downloaded, store on their computers, and even mail on hard drives in order to be able to analyze them. The downloading process can take time and require resources. In a data cloud environment, Cavatica not only stores the data but also enables the use of Cavatica’s computer power to analyze the data avoiding a need for the data download and use of powerful computers for researchers. The portal has ready to use bioinformatic tools to use “in the cloud” at any time and any place you can access Cavatica. And the data stored on the portal can be either already analyzed or raw depending on what the scientist needs. Cavatica holds currently the data from many contributing sites where data was generated, starting with CBTN members. In addition, the portal holds not only tumor data but also other pediatric diseases allowing scientists to look for similarities between diseases that could inform therapy development'

Why is CBTN different from other biobanks?

CBTN understands that the impact of donated tissue and other biospecimens increases exponentially the more they are used for research.. That is why we have worked to create the largest collection of pediatric brain tumor biospecimens on earth, and strive to make all specimens, PDX models, cell-lines, and other resources available at no cost to the global community of cancer researchers. specimens are clinically annotated and paired with genetic data, all collected at various points along a patient’s cancer treatment journey. And with CBTN’s cloud-based data analysis platforms, researchers can access latest data in near real-time, from anywhere on earth. This model of open collaboration and research sharing significantly shortens the time it takes to launch new research projects and make valuable scientific discoveries.

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. The tissue submitted to CBTN can be requested at anytime by the families.

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.

What are cell lines? How are they used to advance research?

Cell lines are essentially a copy of the tumor. They can be continually grown in culture so they are considered a renewable source of a biological sample. These lines are first tested to ensure they match the original tissue sample. They can then be used in many ways by researchers, including testing against existing drugs to determine if the drugs might be effective against that particular cancer.

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.

CBTN has “longitudinal” data and samples. What does that mean?

• CBTN doesn’t just collect one sample at one point in time, we collect samples from subsequent surgeries if the tumor regrows or progresses. Additionally, if we first received samples from a recurrence or progression surgery, we will attempt to obtain samples and clinical data from previous surgeries.
• The longitudinal data refers to the multiple time points following surgery. For CBTN, this is 6, 12, 18 and 24 months, 3, 4, 5 and 10 years following surgery. We will review the medical record of the patient to review how the patient is doing, if the tumor has regrown or progressed, or if treatment has changed. If there is another surgery, samples are once again collected and the “clock” to collect follow up information is restarted.

Why is it important to collect clinical data and samples multiple times throughout a patient’s treatment journey? Isn’t once enough?

Collecting samples and clinical data at multiple times will help researchers understand what is happening to the tumor over time due to treatment and why tumors are more resistant to certain types of treatment versus others. Researchers can see changes at the molecular level to better understand the tumor. Additionally, researchers can identify best treatments for each tumor type based on that comprehensive data.

How can genomic data help us better understand pediatric cancer?

Genomic data from tumor samples, blood and saliva can help to discover the changes or mutations that caused the tumor. These mutations can help to drive treatment where certain drugs might target that specific mutation. This is precision medicine. If there isn’t a known treatment for a mutation, one might be developed or even obtained from other cancers. For example, if there is a known mutation in cervical cancer with a highly effective targeted treatment, studies can be developed to potentially use that treatment for a brain tumor with the same mutation. Additionally, the genomic information can help discover the molecular reasons why many rare diseases are connected. For example, why a child with a predisposition of neurofibromatosis 1 (NF1) is more likely to have a low grade glioma brain tumor later in life than those children without NF1.