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Children’s Hospital of Philadelphia’s Center for Data Driven Discovery in Biomedicine Receives Up to $10 Million ARPA-H Award to Create Tool for Sharing Data on Cancer and Rare Diseases

Funded by the Advanced Research Projects Agency for Health, the RADIANT project has the potential to establish a model for control data in clinical trials for difficult-to-treat diseases

This article originally appeared on chop.edu.

Philadelphia October 9, 2024 – A multi-institutional program led by researchers Adam Resnick and Allison Heath at the Center for Data Driven Discovery in Biomedicine (D3B) at Children’s Hospital of Philadelphia (CHOP) has received up to $10 million Advanced Research Projects Agency for Health (APRA-H) Mission Office Innovative Solutions Openings award to research, validate and implement a new model for sharing and integrating data at a national level. This 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 upon years of pediatric research at 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. The RADIANT project is the first ARPA-H-funded project at CHOP.

“In the setting of pediatric brain tumors and other rare diseases, we often do not have a curative standard of care,” said Adam Resnick, PhD, 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.”

Expanding on platform tools developed as part of the Gabriella Miller Kids First Data Resource Center and the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Data Hub, 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.

Researchers at CHOP’s D3B will be partnering with other institutions across more than 35 hospitals comprising the Children’s Brain Tumor Network (CBTN) and the Pediatric Neuro-Oncology Consortium (PNOC) 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 “Jay” Storm, MD, 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,” “A core tenet of our mission has always been the marriage of research and clinical work, and when fully realized, the work accomplished through this award will transform how bench-to-bedside models of care can improve patients’ lives.”

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.

“We need to standardize and advance multiple data workflows across institutions in ways that create a unified, real-time view of a patient, combining clinical data workflows with research data from observational and clinical trials,” said Sabine Mueller MD, PhD, co-executive chair of CBTN and co-leader of PNOC. “Many pediatric brain tumor patients have no curative standard of care, it’s only through advancing new models of care empowered by these technologies that as clinicians we’ll be able to enhance options for our patients and their participation in clinical trials.”

In addition to partnering institutions across CBTN and PNOC, the RADIANT initiative brings together investigators from the Centre Hospitalier Universitaire Sainte-Justine and the HealthShare Exchange (HSX) as well as technology partners including Amazon Web Services, MuleSoft (from Salesforce), Kno2, Peyk, and Flywheel.

Founded in 2022, the ARPA-H is an agency within the Department of Health and Human Services with a mission of accelerating better health outcomes for everyone by supporting the development of high-impact solutions to society’s most challenging health problems. The agency aims to ensure access to solutions regardless of demographics or geography, leveraging diverse perspectives for sustained equity across their policy, practices and programs.

This research is supported by ARPA-H under agreement number 140D042490007.

About Children’s Hospital of Philadelphia:

A non-profit, charitable organization, Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, the hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. The institution has a well-established history of providing advanced pediatric care close to home through its CHOP Care Network, which includes more than 50 primary care practices, specialty care and surgical centers, urgent care centers, and community hospital alliances throughout Pennsylvania and New Jersey, as well as the Middleman Family Pavilion and its dedicated pediatric emergency department in King of Prussia. In addition, its unique family-centered care and public service programs have brought Children’s Hospital of Philadelphia recognition as a leading advocate for children and adolescents. For more information, visit https://www.chop.edu