The Children's Brain Tumor Tissue Consortium (CBTTC) Infrastructure Facilitates Collaborative Research in Pediatric Central Nervous System Tumors

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Alex Felmeister, Rishi Lulla, Angela Waanders, Pichai Raman, Mariarita Santi, Jena Lilly, Jennifer Mason, Javad Nazarian, Adam Resnick
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The Children’s Brain Tumor Tissue Consortium (CBTTC) is a multi-institutional, international research collaboration comprised of 13 institutions utilizing an infrastructure of web based open source tools to accelerate pediatric brain tumor research. The CBTTC mission is to provide the largest accessible, de-identified, longitudinal clinical data set linked to available biospecimens and -omic data in the world.

Clinical data collection and protection of Personal Health Information (PHI) is a major research regulatory hurdle. The CBTTC database is protected by a custom designed electronic honest broker that maintains links from a subject to multiple research records in the physical biobank and data collection tool. Currently the CBTTC utilizes three interconnected open source tools; the biorepository portal, electronic honest broker and the harvest query tool. CBTTC biospecimen and clinical records are also connected via web-protocols to the pedCBioPortal, a genomic data visualization tool, and Cavatica, a cloud based infrastructure genomic data storage and analysis. These tools work concurrently and communicate over https protocols and complement well known research tools such as an enterprise laboratory management systems (LIMS) and REDCap for data management. They are further expanded to include imaging tools, pathology slide review, genomic analysis and file repository resources.

The CBTTC integrates phenotypic and genomic data for pediatric brain tumors and associated biospecimens. The platform facilitates open ended longitudinal data collection currently reflecting 1,900 subjects and 9,140 specimens available for research. The CBTTC has empowered 16 unique hypothesis driven collaborative research projects to date (See: Remarkably, researchers are able to link molecular biology findings with clinical information such as overall survival through the web-based interface.

The web-platform based approach facilitates real-time collaboration with researchers around the world. The CBTTC continues to grow, with additional collaborating sites and data generation added each year.