Clinical & Specimen Data

biorepository_8The Children’s Brain Tumor Tissue Consortium has enrolled more than 2,000 subjects and contains over 12,000 tubes of specimens, all highly annotated with clinical data and available for request by researchers across the world.  These achievements are the result of the hard work and dedication of the CBTTC Institutional Members at The Children’s Hospital of Philadelphia (CHOP), The University of Pittsburgh Children’s Hospital, Seattle Children’s Hospital, Lurie Children’s Hospital in Chicago, Meyer Children’s Hospital in Florence, Italy, Benioff Children’s Hospital of UCSF, Lucile Packard Children’s Hospital Stanford in California, Bristol-Meyers Squibb Children’s Hospital at Robert Wood Johnson University Hospital in New Jersey, Children’s National Health System in D.C., Weill Cornell Medicine in New York,  Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, Children’s Hospital of Orange County: CHOC Children’s, University of California Santa Cruz: Treehouse Childhood Cancer Initiative, The Beijing Tiantan Hospital Neurosurgery Center (Beijing, China), Genebank (Beijing Genomics Institute – Shenzhen, China) and the dedication and support of the Children’s Brain Tumor Foundation, the International Licensing Industry Merchandisers’ Association, countless volunteers and dedicated donors. The commitments of these partnerships and others being forged will only further ensure the shared vision to identify better testing, treatments, and outcomes for children diagnosed with these devastating diseases.

Specimen Collection

All  specimens collected by the CBTTC are considered a gift from our donors and their families. The specimen and accessioning process follows a detailed workflow to ensure that donated biospecimens are preserved for later use by researchers.  With this in mind, we make sure to collect our specimens and store them with the utmost care. With standardized best practice across multiple institutions, we hope to build a foundation to allow for faster, more effective scientific breakthroughs.


Process Overview

Blood is collected from patients to be used as a non-tumor control. The genomic data generated from blood samples can be compared to the genetic information of the tumor to identify the occurrence of specific mutations . Tissue samples are collected from a surgery or biopsy and immediately are flash-frozen using liquid nitrogen vapor. This process preserves the integrity of the tissue DNA/RNA, which will be extracted for scientific projects such as whole genome or RNA sequencing. Tissue in freezing media is extracted at the time of surgery and placed in media for cryopreservation and for use in cell line generation.

The tissue samples are sent via courier to the CBTTC Operations Center, where , after tissue is flash frozen and some tissue is placed in freezing media, fresh tissue (not frozen) is brought to the lab and immediately processed as cell lines. Cell lines are used for many different types of studies, in vitro and in vivo.

Specimen Accessioningtubes

Each month, CBTTC member institutions ship biospecimens for processing at the CBTTC’s operations center. All specimens are packaged and shipped with dry ice to maintain specimen quality and minimize degradation of DNA or RNA due to thawing.  Specimens are accessioned into Nautilus, a laboratory information management system (LIMS).  Each submitted specimen is placed inside a tube and labeled with a unique 2D-barcode.  The barcodes are scanned into in LIMS and assigned a specific location within the biorepository. Additional information including weight, volume and any abnormalities are recorded within the specimen’s profile.

Specimen Requests

Requests for specimens are submitted through an online form to the CBTTC operations staff. Each request is thoroughly reviewed for accuracy before being sent to the Scientific Committee for approval. Examples of requests include specimens for whole genome sequencing, RNA sequencing and cell line studies.

The Scientific Committee is comprised of experts in pediatric brain tumor research from each member institution of the CBTTC. Proposed projects are reviewed by each institution for approval.  This process ensures that the specimens at the CBTTC are only used for scientifically valid projects. Project data from an approved request is typically available within one-year following the receipt of specimens. All data generated by specimens from the bank becomes a part of the bank as well. The collected data is stored for use in future approved projects to help identify new treatments for pediatric brain tumors.