About the Childhood Cancer Data Initiative (CCDI)
Childhood cancer impacts those most vulnerable and most needing high-quality research—our young people. To make new discoveries possible and accelerate medical advances, childhood cancer data needs to be more readily accessible outside of where a child, adolescent, or young adult (AYA) is treated. That’s why CCDI is using its resources to create a data ecosystem for the childhood cancer community that enhances data generation and sharing, enables the development of better diagnostics and therapies, and helps inform treatment and care plans.
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.
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.
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 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.