Develop a large-scale database that will transcend existing consortiums and databases and will house molecular, genetic, clinical, and environmental data.
Further, the database will be built for high-volume, high-velocity data processing taking advantage of the latest technologies while allowing for future growth and advancements. The initial primary focus will be brain tumors, starting with data collection in the pediatric population and then expanding into adults.
As of 2016, we have completed this step! We are partnered with the Children’s Brain Tumor Network (CBTN), formerly Children’s Brain Tumor Tissue Consortium (CBTTC), on the Cavatica platform.
Reward qualified researchers and institutions who share data with the database by giving them free access to the database, leveraging existing grant funding, and creating new grants through fundraising efforts.
From initial launch in 2016, access to Cavatica is free. We are currently advocating for other foundations to consider data sharing in their funding models, which is still not common practice. We work closely with the National Cancer Institute around data usage, including how the Childhood Cancer Data Initiative is being structured. We also sponsor a data sharing award, The Research Symbiont.
Provide opportunities for researchers to work with each other and with other experts outside of their field of expertise to expand the horizons of research by pushing their experiences outside the box.
Cavatica has a shared space for collaboration. Additionally, we have an outreach effort to encourage more academic use of the platform. We also continue to collaborate with CBTN to expand tools for collaboration that can include broader collection and deeper analysis of clinical data as well as an interface for patients to report in and query the data in a way that is meaningful to them.
Provide a system for tracking patients from one clinical study and/or hospital to the next and give researchers better long-term data on deaths and survivors.
Patient data is available to researchers in pedCBioPortal, but there is still a great need to further develop tools to show the patient’s journey in ways that are relevant to all stakeholders, including the patients themselves.