The Childhood Cancer Data Initiative: Using the Power of Data to Learn From and Improve Outcomes for Every Child and Young Adult With Pediatric Cancer

Abstract

Data-driven basic, translational, and clinical research has resulted in improved outcomes for children, adolescents, and young adults (AYAs) with pediatric cancers. However, challenges in sharing data between institutions, particularly in research, prevent addressing substantial unmet needs in children and AYA patients diagnosed with certain pediatric cancers. Systematically collecting and sharing data from every child and AYA can enable greater understanding of pediatric cancers, improve survivorship, and accelerate development of new and more effective therapies. To accomplish this goal, the Childhood Cancer Data Initiative (CCDI) was launched in 2019 at the National Cancer Institute. CCDI is a collaborative community endeavor supported by a 10-year, $50-million (in US dollars) annual federal investment. CCDI aims to learn from every patient diagnosed with a pediatric cancer by designing and building a data ecosystem that facilitates data collection, sharing, and analysis for researchers, clinicians, and patients across the cancer community. For example, CCDI's Molecular Characterization Initiative provides comprehensive clinical molecular characterization for children and AYAs with newly diagnosed cancers. Through these efforts, the CCDI strives to provide clinical benefit to patients and improvements in diagnosis and care through data-focused research support and to build expandable, sustainable data resources and workflows to advance research well past the planned 10 years of the initiative. Importantly, if CCDI demonstrates the success of this model for pediatric cancers, similar approaches can be applied to adults, transforming both clinical research and treatment to improve outcomes for all patients with cancer.

Germline Genetic Testing and Survival Outcomes Among Children With Rhabdomyosarcoma

“…Because the fusionstratified analysis was limited by sample size, a larger sample of patients who had fusion-positive RMS is needed to validate these results. 28 In the present study, none of the patients with fusionpositive RMS harbored a CPV. 13 Because survival was comparable to patients with fusion-positive RMS, CPV status among patients with fusion-negative RMS might represent an important prognostic factor for this group of patients.…”

“…We also found that the outcome among patients who had fusion-negative RMS with a CPV was not significantly different than patients who had fusion-positive RMS; the outcome was worse compared with patients with fusion-positive RMS, although this association was not statistically significant. Because the fusion-stratified analysis was limited by sample size, a larger sample of patients who had fusion-positive RMS is needed to validate these results . In the present study, none of the patients with fusion-positive RMS harbored a CPV .…”

Children's Oncology Group's 2023 blueprint for research

“…Project:EveryChild also provided an efficient platform to launch the Childhood Cancer Data Initiative (CCDI) Molecular Characterization Initiative (MCI) in March 2022 7 . To address the unequal access to molecular testing at diagnosis, MCI is open to children, adolescents, and young adults with newly diagnosed central nervous system tumors, soft tissue sarcomas, and selected rare tumors.…”

Childhood cancer data initiative: Status report

“…Currently, MCI is open for enrollment of children and adolescent and young adult (AYAs) with newly diagnosed central nervous system tumors, soft tissue sarcomas, or rare tumors, who are undergoing treatment at a COG member institution and enrolled on COG's Project EveryChild. 1 Enrollment will soon extend to patients with newly diagnosed high-risk neuroblastoma, followed by Ewing sarcoma, to coincide with forthcoming COG clinical trials.…”