Frequently Asked Questions

If your child has been diagnosed with a brain tumor, he or she may be eligible to donate to the CBTTC. Please ask your child’s doctor for more information.

Acronym Dictionary

CBTTC – Children’s Brain Tumor Tissue Consortium
PNOC – Pacific Pediatric Neuro-Oncology Consortium
CHOP – Children’s Hospital of Philadelphia
BioRC – BioRepository Core (The core collects and organizes biospecimens to serve all of the CBTTC’s biobanking needs while providing broad access to data and materials.)
LIMS – Laboratory Information Management System (i.e. Nautilus) (A general-purpose database that tracks biospecimens and promotes regulatory compliance while excluding any subject’s patient health information.)
SDG ID “Sample Delivery Group”; aka the clinical event ID (The ID (i.e. “7316-###) associated with biospecimens obtained from a clinical event and used to identify biospecimens in Nautilus.)
BRP – BioRepository Portal (Portal used to associate the SDG ID to a subject’s health records.)
CAG – Center for Applied Genomics
BGI Beijing Genomics Institute
CNGB  China National Genebank
CHOC – Children’s Hospital of Orange County
UPMC – University of Pittsburgh Medical Center
UCSC – University of California, Santa Cruz
UCSF – University of California San Francisco
COG – Children’s Oncology Group (CHOP)
CCCR – Center for Childhood Cancer Research (CHOP)

Tumor Type

DIPG (Diffuse Intrinsic Pontine Glioma) – A highly aggressive Grade IV astrocytoma typically located in the pons of the brainstem and are diffusely infiltrating which makes these tumors inoperable.

HGG (High Grade Glioma) – Highly malignant solid tumors arising from transformed cells of the brain and/or spinal cord (also called primary CNS tumors); Grade III and IV.

LGG (Low Grade Glioma) – Tumors arising from glial cells and categorized as Grade I and II; most low-grade gliomas are highly treatable and highly curable.

ATRT (Atypical Teratoid Rhaboid Tumor) – A rare, fast-growing, Grade IV tumor typically presented as a brain tumor, but can occur anywhere in the central nervous system; represents 3% of pediatric cancers of CNS.

DNET (Dysembryoplastic Neuroepithelial Tumor) – Glioneuronal tumors most commonly classified as benign tumours; Grade I of the WHO classification.

PNET (Primitive Neuroectodermal Tumor) – A malignant, Grade IV tumor derived from the neuroectoderm; typically presented in the cerebrum, but can spread to other parts of the brain/spine.

MPNST (Malignant Peripheral Nerve Sheath Tumor) – Also known as “malignant schwannoma”, “neurofibrosarcoma”, and “neurosarcoma”; a cancer of the connective tissue surrounding nerves.

Frequently Asked Questions

Who donates tissue to the CBTTC?

People from all backgrounds and communities donate to the CBTTC.

 

How do I donate tissue?

If your child has been diagnosed with a brain tumor he or she may be eligible to donate to the CBTTC. Please ask your child’s doctor for more information. Your child’s physician will talk to you about the CBTTC, your consent to donate samples, and answer any questions you may have.

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

 

What are samples?

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

 

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.

 

How will my privacy be protected?

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

 

What will happen to the samples and information collected?

The samples and information will be stored at The Children’s Hospital of Philadelphia (CHOP). All information that identifies the donor will be 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 CBTTC is only what is left over after the tissue collected from a biopsy or resection is used for the child’s care. Many families give permission for unused portions of tissue to be submitted to the CBTTC in the hope that new knowledge might help other patients in the future.

 

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

Updates about each research study are displayed here on the CBTTC’s website (www.cbttc.org)

 

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 CBTTC 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.

 

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 CBTTC research is not part of your child’s diagnosis process.