CCDI Overview November 2022

Editor's Notes

• #4: The Childhood Cancer Data Initiative (CCDI) improves treatments, quality of life, and survivorship by learning from every child.
• #8: As I believe many of you know, CCDI was first proposed in the 2019 State of the Union address to provide a total of $500M over 10 years to the NCI to support childhood and AYA cancers. With limited funds, it was decided to focus on data sharing to maximize the benefit and power of the critical data being generated to study childhood, adolescent and young adult malignancies. As we know, cancers in children and AYAs are rare — representing approximately 4% of cancers diagnosed annually in the United States, which poses many research challenges. The CCDI is being leveraged to building a wider community centered around childhood cancer care and research data; one that can collectively improve treatments, quality of life, and survivorship by learning from every child. Specifically, this means collecting high-quality data, consistently, from every patient diagnosed, particularly those with ultra-rare forms of cancer. And that has to happen whether they are treated at major academic medical facilities, or in their local communities. Further, those data have to be shared, and made accessible in rapid, comprehensive fashion to ensure that every child can benefit. The long-term vision for NCI, and for pediatric/AYA cancer communities, is to enhance data sharing, accessibility, and usability in a way that is most broadly beneficial. We want this initiative to serve as an example for how the larger adult research and participant communities can maximize their data value to benefit cancer research. 
• #10: As NCI has done with other major initiatives, Dr. Sharpless convened this working group supporting CCDI to advise the Institute regarding opportunities to bring together or generate data describing cancers in children and young adults, and to identify and address gaps in data sharing to make it work better for patients, survivors and families. These members with diverse expertise in the pediatric research and care communities further sought to define the pressing scientific questions that would provide the opportunity to deliver significant changes in outcomes for kids with cancer when answered.
• #16: NCI has long had a number of programs dedicated to research in childhood and AYA cancers and survivorship; several that have been ongoing for many years and several more programs that were launched more recently in the context of these Acts, the Cancer Moonshot and now CCDI efforts. CCDI is an important initiative of the NCI It allows us the opportunity to look across the investments NCI has already made to address childhood cancer, and think about how those can be linked and leveraged to increase progress We are confident that using CCDI to bring these datasets together in a thoughtful and meaningful way will begin to provide a firm foundation for the insights and innovation that this data-focused initiative can produce for many years to come. While these efforts are in some ways on independent paths, NCI is moving them forward together – parallel efforts that complement and strengthen each other, and that will naturally intersect in order to make each effort as scientifically strong as possible, to maximize their success, and their impact for children with cancer.
• #36: While efforts are underway to develop the National Childhood Cancer Registry and the Pediatric Preclinical Data Commons here at the NCI, we recognize that CCDI activities started this year and moving forward will need to incorporate mechanisms to more actively federate with additional clinical and research data resources both within and outside of NCI. Our vision for establishing a wider ecosystem includes many types of data from discovery science, to patient care, to population and surveillance studies that can be queried in a meaningful way by a variety of stakeholders in the pediatric/AYA cancer communities. Components of this federated pediatric cancer data ecosystem include an essential underlying data science infrastructure, enhanced cloud-computing platforms, Services that link disparate information (including clinical, image & molecular characterization data) stored in data repositories and registries. Successful implementation of this CCDI infrastructure requires development and promotion of standards & tools for data interoperability, as well as a clear plan for sustainability & data governance to ensure long-term health and function of the ecosystem.
• #38: Many resources are available now for clinical trials, data, and analysis More resources are being actively developed Finding relevant resources can be challenging
• #39: Data Catalog is a NCI sponsored guide for exploring the
• #40: CCDI is using each critical piece of data to help the research and clinical care communities complete the puzzle and provide the bigger picture that is needed to understand each individual cancer and improve lives for children and their families. Focusing CCDI activities on building sound infrastructure to manage and share clinical care and research data, developing and refining tools to analyze and use those data effectively, ensuring our research efforts create comprehensive and meaningful datasets that lead to impactful discoveries, and seeking to collect and use data that can be translated into novel therapies, will provide the pediatric/AYA cancer communities with the answers needed to make progress. The Childhood Cancer Data Initiative is committed to joining with the full community to improve treatments, quality of life, and survivorship by learning from every child.
• #42: Planning efforts for these pending opportunities are currently underway and we expect to have more concrete information coming out over the next few months. So please do continue to check the CCDI website for updates.