Innovative infrastructure for longitudinal clinical, omics and patient-reported outcomes for childhood cancer research
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Interoperability
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AN AUDACIOUS IDEA TO CREATE THE NATIONAL VIRTUAL CHILDHOOD CANCER REGISTRY (NVCCR)
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Integrating NIH Clinical Center EMR with Research Efforts
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Radiomics Data
A lot of work are ongoing in integrating genomics data with the clinical data. However, if we want to strive for a more complete and comprehensive data infrastructure, it's important to target other -omics data. We need to think through what are the best ways to incorporate radiomics and imaging data into this data infrastructure. This is a very critical component of cancer studies and not very well implemented yet.
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Avoid redundancy of effort, look to CBBTC as a proven structure to build upon
In 2014, just three years after its launch, CBTTC became the first and largest clinically annotated biospecimens repository with real time querablilty. With the launch of CAVATICA, its genomics analytic platform, it became the first brain tumor consortia to solve cloud-based, global WGS analysis, and was recognized... more »
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Quality Control Standards
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Common data model
Currently, large amounts of data exist for childhood cancer. The biggest of these is the data generated by the Children's Oncology Group. In order for data to be used, it must be formatted and structured appropriately. This starts with a common data model. Incorporating something similar to the data model used by PCORnet and applying it to childhood cancer data (COG and others) would maximize its utility.