Children’s Brain Tumor Tissue Consortium Frequently Asked Questions
WHAT IS THE CHILDREN’S BRAIN TUMOR TISSUE CONSORTIUM (CBTTC)?
The Children’s Brain Tumor Tissue Consortium (CBTTC) is a collaborative, multi-institute research program dedicated to the study of childhood brain tumors. The CBTTC is committed to improving outcomes for children with brain tumors by supporting research that will lead to new treatments and diagnostic tools. The CBTTC has made great strides toward increasing worldwide collaboration by sharing efforts to advance informatics, building a large store of brain tumor tissue in a state-of-the-art biorepository, and bringing together the leading experts in the field. The long-term goal of the CBTTC is to stimulate tissue-based research and increase worldwide access to the molecular analysis of large numbers of tumor specimens, so that new diagnostic tests and treatments can be developed.
WHICH TUMORS DOES THE CBTTC COLLECT?
The CBTTC collects all pediatric brain tumor types from the most common to the rarest including medulloblastomas, ependymomas, malignant and low grade astrocytomas, brain stem gliomas, germ cell tumors, meningiomas, pineal tumors, and craniopharyngiomas. The current inventory is available to researchers 24 hours a day 7 days a week at https://eig.research.chop.edu/cbttc/
HOW MANY TUMOR SAMPLES DO YOU NEED TO COMPLETE THE RESEARCH PROGRAM?
The first objective of the CBTTC is to continually collect specimens and clinical data on all pediatric brain tumor types. Once collected, the CBTTC will perform analysis on the specimens to share raw genomic information with the scientific community. This genomic data is non-consumptive and can be used over and over again in numerous research projects. The collection of specimens and data and the annotation with genomic data will continue over time to ensure that scientists can test new targeted therapies, combat resistances and move toward personalized medicine.
HOW WAS THE INITIAL GROUP OF MEDICAL CENTERS THAT WILL BE PARTICIPATING SELECTED?
The initial group of medical centers agreed that to accelerate research, institutions and scientists would need to collaborate by freely sharing data and biospecimens. The four criteria to become a CBTTC Primary Member Institution : (1) a large number of pediatric brain tumor patients operated on each year and agreement to send 75% of all tissue specimens to the CBTTC; (2) strong scientific research community with experience in the analysis of molecular data; (3) documented high quality clinical data management within a multi-institutional collaboration; (4) institutional agreement to participate by members of the neurosurgery, pathology, and neuro-oncology faculty.
WHO WAS THE INITIAL GROUP OF PARTICIPATING MEDICAL CENTERS?
The initial members were The Children’s Hospital of Philadelphia led by Tom Curran FRS PhD, Peter Phillips MD, Jay Storm MD and Adam Resnick PhD, Seattle Children’s Hospital led by Russ Geyer MD and Sarah Leary MD, The Ann and Robert Lurie Children’s Hospital of Chicago led by Stewart Goldman MD and the Children’s Hospital of Pittsburgh led by Ian Pollack MD.
WILL OTHER MEDICAL CENTERS BE ABLE TO JOIN?
Yes, contingent on funding, the consortium will add primary member institutions that meet the above criteria. Institutions that do not meet the criteria can become satellite members to the primary institutions and participate in the CBTTC program.
WHY IS THE CHILDREN’S HOSPITAL OF PHILADELPHIA SERVING AS THE OPERATIONS CENTER?
The Children’s Hospital of Philadelphia has invested heavily in a state of the art biorepository, informatics system and high-volume molecular genetic processing facility. This infrastructure saves the CBTTC millions of dollars in potential equipment, software development, and information technology systems costs. In this role CHOP has agreed to be the steward for the data and biospecimens and ensure the objectives and mission to freely share specimens and data is upheld.
WHAT DO THE PARTICIPATING MEDICAL CENTERS NEED TO DO IN ORDER TO BE MEMBERS?
Each participating medical center agrees to submit a portion of tumor tissue as well as clinical data on the majority of the pediatric brain tumors operated upon at their center each year. This does not mean that they will submit the entire removed tumor, because some is needed for diagnostic purposes. In addition, all of the participating centers have institutional research needs for pediatric brain tumor tissue. At minimum, a pea-sized portion of tumor will be submitted to the CBTTC. Member institutions will also submit clinical data for each patient, which will be updated on a regular basis.
ARE YOU GOING TO COLLABORATE WITH OTHER GROUPS THAT COLLECT BRAIN TUMORS FOR MOLECULAR ANALYSIS?
Yes, we will work with any and all groups interested in collaboration and who will agree to the free sharing of data and materials to facilitate research.
HOW IS THE DATA GOING TO BE SHARED?
The clinical data and inventory status of the specimens are available 24 hours, 7 days a week. The CBTTC is currently working on an informatics platform for researchers to be able to share and collaborate on genomic data. Due to the vast size of the genomic files and the computational power for analysis at the present time, it is difficult to share, analyze in place and store genomic data sets for tumors. However, the CBTTC will lead the field in creating an informatics platform solution to facilitate collaboration.
Applications for request of biospecimens can be submitted at any time. All requests are sent to the CBTTC Scientific Committee for review.
HOW WILL YOU MAINTAIN THE CONFIDENTIALITY OF PATIENTS WHOSE TUMORS ARE USED?
The CBTTC has developed an informatics system that allows for clinical data to be collected for a patient over time while coding it for use by researchers. A barcode system is used to remove all patient identifiers from all tissue and specimens.
WHAT DOES THE CBTTC COST TO OPERATE?
The CBTTC provides financial support for each institution to participate by supporting data management, tissue processing and handling costs, and institutional pathology costs. At the operation center, genomic and data analysis (bioinformatics) are performed in addition to preparing and maintaining tumor cell cultures and animal tumor models, establishing and maintaining a comprehensive clinical database and management of all regulatory activities.
You can also find out more about the CBTTC on their website, www.cbttc.org