ENABLING NCI CLINICAL & RESEARCH DATA SHARING

The National Cancer Institute (NCI) is the Federal government’s principal agency supporting cancer research. The Institute conducts research in its own facilities, directs research executed under contracts, and provides grant support for research and training in non-Federal institutions in the United States and abroad. One of the overarching goals of the NCI is to enhance and enable data sharing for NCI programs.

CBIIT seeks to achieve this in many ways including creating a foundational platform for sharing data (Cancer Research Data Commons - CRDC) and creating new models for community-wide research, using the collaborative efforts of childhood cancer community as a model.

Childhood cancers are rare but are the leading cause of death past infancy. They make up approximately 1% of all newly diagnosed cancers and causes of most childhood cancers are not known. Adolescent and young adult (defined by NCI as between ages 15 and 39) cancers constitute 5% of all cancers, according to the NCI Surveillance, Epidemiology, and End Results (SEER) program.

In December 2019, Congress approved funding for the Childhood Cancer Data Initiative (CCDI). CCDI is aimed at improving treatment and outcomes for childhood cancer patients by accelerating data collection, analysis, and sharing. Currently, data for pediatric cancer are often fragmented and stored in many separate databases, and it can be difficult for researchers and clinicians to get access.

It is necessary to build a pediatric data ecosystem to maximize access, use, and interoperability of childhood cancer data and improve our ability to prevent, diagnose, and treat childhood cancer patients.