About the Childhood Cancer Data Initiative (CCDI)
While childhood cancers are the leading cause of death by disease in children over the age of 1, they are collectively rare. Childhood cancers make up about 1%‒3% of cancers diagnosed annually in the United States. Information on diagnosis, treatment, and outcomes is often stored at the hospital or institution where a child is treated, making it difficult to answer scientific questions about childhood cancers.
CCDI is working to connect and share clinical care and research data generated by children’s hospitals, clinics, or networks with the broader community. By doing so, we can learn faster and on a much larger scale than any single institution caring for children, adolescents, and young adults (AYAs) can learn on its own.
A national commitment
CCDI represents an ambitious effort in data collection, sharing, analysis, and access. In 2019, NCI hosted a symposium and developed an ad hoc Board of Scientific Advisors working group who provided recommendations for the future of the initiative. It is a $50 million federal investment made in each fiscal year since 2020, with an additional $50 million proposed each fiscal year for a total of 10 years. These funds allow NCI to bring the nation’s childhood cancer research, advocacy, and care communities together in this endeavor.
Childhood Cancer Data Initiative Vision
The Childhood Cancer Data Initiative (CCDI) is building a community centered around childhood cancer care and research data. Advocates and researchers within the pediatric cancer community discuss the CCDI and share its importance, goals and potential outcomes for treating children and AYAs with cancer.
How CCDI is structured
For CCDI to be successful, it requires the engagement of the entire childhood cancer care and research community. To enable broad participation, CCDI is organized into committees and working groups that include diverse representation from the childhood cancer community (experts from within and outside NCI), including advocates, pediatric oncologists, researchers, and data scientists that represent the children, adolescents, and young adults served.
Task forces
We are beginning to form task forces whose focus will be making progress in CCDI priority areas. Each task force will have a set of goals and objectives, which we will work to accomplish using consistent approaches and with the resources available to CCDI. Additional information will be added here as these task forces develop.
Working groups and committees
CCDI Steering Committee
Provides overarching direction on high-level strategic goals and scientific priorities that inform all CCDI activities. The committee will ensure plans, decisions, and actions are prioritized and aligned with broader NCI and CCDI goals. It will also recommend ways to maximize the impact of CCDI on accelerating progress in childhood cancer research, prevention, care, and survivorship.
CCDI Engagement Committee
Identifies ways to engage the broader childhood cancer community as critical partners. The committee will ask for community input and work to understand the data, education, and analytics needs of researchers, care providers, advocates, and patients and their families. It will also identify opportunities, here and abroad, for partnerships that enhance childhood cancer research.
CCDI Childhood Cancer Data Platform Working Group
Defining a strategy to create a platform, or infrastructure, to enhance sharing of new and existing data from NCI and other sources and make data easier to find and use. The platform will also include tools for analyzing and visualizing data to help improve treatments for childhood cancers in alignment with the Research to Accelerate Cures and Equity (RACE) for Children Act.
CCDI National Childhood Cancer Cohort
Developing a set of strategies to gather data from every child diagnosed with cancer in the United States. To help meet cohort objectives, NCI has developed the rapidly growing National Childhood Cancer Registry (NCCR) to leverage the nation’s existing, primarily adult, cancer registries to identify and follow childhood cancer cases. NCCR*Explorer provides access to data from the NCCR.
CCDI Childhood Molecular Characterization Protocol Working Group
Planned the Molecular Characterization Initiative to provide detailed clinical and molecular data that will help doctors determine treatments for children, adolescents, and young adults with cancer and help researchers learn more about childhood cancers. Enrollment in the initiative is offered initially through participation in Project:EveryChild, a childhood cancer registry maintained by the Children's Oncology Group. The effort also represents a collaboration between CCDI and biospecimen collection projects that NCI is supporting through its implementation of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act.
CCDI Cross-Cutting Issues Team
Addresses key topics and issues that affect multiple working group activities within the initiative. The team will develop guidelines to ensure that activities can be implemented in a consistent manner across working groups and in alignment with CCDI priorities.