CHOP’s Center Gets up to $10 Million ARPA-H Award to Create Data Sharing Tool

Rare Daily Staff

The Advanced Research Projects Agency for Health has awarded a grant for up to $10 million to a multi-institutional program led by researchers at Children’s Hospital of Philadelphia’s Center for Data Driven Discovery in Biomedicine to research, validate and implement a new model for sharing and integrating cancer and rare disease data at a national level.

The new model is designed to empower research on cancer and other rare diseases in real time, accelerating discoveries and transforming the quality of care for children affected by disease.

The project – Real-time Analysis and Discovery in Integrated And Networked Technologies (RADIANT) – builds on years of pediatric research at the Center for Data Driven Discovery in Biomedicine (D3B) aimed at innovating health care and processing millions of points of data at a larger scale to discover underlying causes of complex cancers and diseases and making those findings rapidly available to researchers and clinicians across the country and the world.

“In the setting of pediatric brain tumors and other rare diseases, we often do not have a curative standard of care,” said Adam Resnick, research scientist in the Department of Biomedical and Health Informatics at CHOP and co-executive director of D3B. “As a result, most patients actively participate in a research care model that includes participation in research protocols and clinical trials. Our vision for RADIANT is that clinicians and researchers are able to access real-time data about all patients who might share similarities across different data modalities with any one patient, harnessing cloud-based tools and computation to advance real-time decision making and diagnostics and expedite a patient’s access to potential precision medicines and personalized treatments or relevant clinical trials.”

The RADIANT project aims to advance new technologies and tools as part of a network architecture that advances the real-time integration of data from a participating patient’s electronic health records with genomic and imaging data. With CHOP as the coordination center of the initiative, the goal is to scale linkages across a network of hospitals throughout the nation, sharing critical data and information as well as providing resources for interpreting that data.

While the initial goals of the RADIANT project will be to use these tools to enhance the precision-based care patients receive while under treatment by their doctor, advancing the research care framework will ultimately inform new models for clinical trial coordination and enhance patient access to care through such trials.

Researchers at CHOP’s D3B will be partnering with other institutions across more than 35 hospitals comprising the Children’s Brain Tumor Network and the Pediatric Neuro-Oncology Consortium to develop, deploy, and pilot this groundbreaking resource that advances the interoperability and use of data through platform-enabled standardization and emerging technologies that harness powerful new tools and computational approaches.

“D3B has been able to consistently accelerate discoveries in pediatric cancer, thanks to our focus on big data and the collaborative researchers around the world who utilize our platforms,” said Phillip Storm, chief of the division of neurosurgery and co-director of the Neuroscience Center at CHOP and co-executive director of D3B data. “This award takes the advancements we’ve made in the field of pediatric brain tumors and expands them in exciting new directions.”