The initiative aims to build a connected data infrastructure to enable sharing of childhood cancer data from multiple sources. Many factors need to be considered before developing the data infrastructure, starting with a review of existing data repositories and the development of policies associated with data access, long-term patient follow-up, collecting and storing sensitive patient data, and returning research results to patients.
Answer one or more of the following questions in your response:
- What gaps are there in existing childhood cancer data repositories?
- What are the opportunities for linking existing and new data repositories?
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.
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 »
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.