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Children’s Brain Tumor Tissue Consortium Frequently Asked Questions

November 30, 2009

Is the Children’s Brain Tumor Tissue Consortium (CBTTC) just another brain tumor tissue bank?

No, in fact the CBTTC is not actually a tissue bank.
 
A tissue bank is a place that collects and holds brain tumor tissue collected at the time of surgery. This is called a deposit. Usually, the tumor is stored in a freezer until a researcher requests a piece of it. This is called a withdrawal. At that time some or all of the tissue is sent. Once it is sent, the researcher often uses it up so that no other different studies can be done. Tissue banks are generally “passive” structures that do not stimulate new research, often have poor quality control, and lack a comprehensive clinical database.

The CBTTC is a unique research platform in which tumor tissue is processed for comprehensive molecular (e.g., DNA, RNA, and protein) analysis using state-of-the-art methods and the data results of that analysis, together with new brain tumor models and relevant clinical information, are sent back to the participating institutions. In comparison to tissue banks, the CBTTC actively stimulates research by providing high-quality data that can be rapidly and efficiently analyzed by participating institutions.

Which tumors are going to be collected and analyzed?

We will collect all pediatric brain tumor types including the most and least common, the most and least malignant. These will include medulloblastomas, ependymomas, malignant and low grade astrocytomas, brain stem gliomas, germ cell tumors, meningiomas, pineal tumors, and craniopharyngiomas.
 

How many tumor samples do you need to complete the research program?

Our goal is to collect and analyze more than 2,000 pediatric brain tumors over a 5 year period. While valuable results can be obtained with a small numbers of rare tumors, the most important research questions require large numbers of tumor to be analyzed.
 

How were initial group of medical Centers that will be participating selected?

The initial group of medical centers is based on four criteria: (1) a large number of pediatric brain tumor patients operated on each year; (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.
 
 

Will other medical centers be able to join at a later date?

Yes, contingent on funding, we plan to expand the consortium, using the same criteria described above, to include up to 3 additional sites after the first year of operation.
 

Why is The Children’s Hospital of Philadelphia serving as the operations center?

The Children’s Hospital of Philadelphia has invested heavily in a high-volume molecular genetic processing core facility, the Center for Applied Genomics (CAG). The CAG has the instrumentation capacity to analyze all brain tumor specimens rapidly. It also has developed a bar-code system for removing all patient identifiers from tissue specimens and the informatics system to link clinical data with tumor tissue data without patient identifiers (to maintain confidentiality). The Director of the CAG has agreed to allow the Children’s Brain Tumor Tissue Consortium to use CAG facilities for molecular studies and data analysis. This agreement saves the CBTTC millions of dollars in potential equipment, software development, and information technology systems costs.
 

What do the participating medical centers need to do in order to be members?

Each participating medical centers 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 tumor for molecular analysis?

Yes, we will work with any and all groups that have large data sets using a similar molecular analysis platform. At the present time, it is difficult to combine data sets for tumors analyzed by different “chips” (Affymetrix vs. Illumina). However, the technology and information science methods for cross-platform comparisons are improving and we anticipate that there will be opportunities to undertake these collaborations.
 

How is the data going to be shared?

Each of the participating institutions will have exclusive and direct access to the molecular data and corresponding clinical data for a period of up to two years from the time of molecular analysis. In addition, all participating institutions will have direct access to all tissue culture and animal tumor models developed by the CBTTC by use of tumor tissue from any of the participating sites. 

This period of exclusive data access is an important incentive for each of the medical centers to participate. After a two year period, the raw data from molecular analysis will be posted on an unrestricted web site which can be accessed by anyone. We are committed to the concept of public access data sharing; however, we will not be able to make the clinical data available on the web, since there remains the remote possibility, despite safeguards described below, that patient confidentiality could be breached.
 

How will you maintain the confidentiality of patients whose tumors are used?

The Center for Applied Genomics at CHOP developed a barcode system to remove patient identifiers from all tumor tissue. Clinical data can only be linked to the tumor tissue by means of a complex computer program. This method of safeguarding patient confidentiality has been reviewed and approved by institutional clinical research review boards.
 

Why does the CBTTC cost more than a Tumor Bank?

Quite simply, the CBTTC costs more than a tumor bank because it does much more than a tumor bank. The CBTTC provides financial incentives for each institution to participate by supporting data management, tissue processing and handling costs, and institutional pathology costs. It pays for the cost of SNP microarray chips, DNA expression chips, RNA analysis, proteomics and data analysis (bioinformatics). It pays for the costs of preparing and maintaining tumor cell cultures and animal tumor models. It pays for the costs of establishing and maintaining a comprehensive clinical database and the costs of computer specialists to assist in the sharing of data with participating sites. In sum, the CBTTC actively promotes the rapid conduct of pediatric brain tumor research by providing data to institutions with a proven track record of research performance. And that costs more than depositing brain tumor tissue into a bank and hoping that someone notices.

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