ARPA-H announces $50M to expand pediatric care across the country

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ARPA-H announces $50M to expand pediatric care across the country

More than 200 pediatric care centers nationwide, from rural towns to large cities, will link data and knowledge to dramatically improve children’s health

The Advanced Research Projects Agency for Health (ARPA-H), an agency within the U.S. Department of Health and Human Services (HHS), today announced $50 million to scale a national pediatric data and knowledge network to improve health outcomes for children with complex diseases—starting with pediatric brain cancer. The effort, called Pediatric Care eXpansion (PCX), will connect more than 200 pediatric hospitals and care centers to securely exchange clinical and research data across the institutions—so clinicians can act on a more complete, usable picture of a child’s care.  Now, no longer where a child lives is a determinant of health: Connecting these centers gives every child—from rural Oklahoma to downtown Philadelphia—the same shot at the right diagnosis and treatment.

Pediatric cancer is the leading cause of disease-related death in American children. Yet, receiving care in the U.S. is a frustrating journey for patients and their families. Today, too much pediatric specialty care is slowed by records trapped in different systems, formats, and departments. Families often become the “data couriers,” carrying binders, CDs, and portal printouts between specialists while care teams make high-stakes decisions without timely access to imaging, pathology, labs, treatment history, and genomics in one place. This disjointed system inhibits clinicians’ ability to access comprehensive health data and buries critical insights that could transform the delivery of precise, life-saving care.  

PCX is designed to compress the time from question to action—from months to weeks—by enabling secure, interoperable sharing of essential health data at national scale.  

PCX will deliver:  

  • A national interoperability and analytics layer—the technical “glue” that makes pediatric brain cancer data findable, usable, and computable across sites, including: 
  • Standards-based interoperability to exchange data across health systems (including EHR, lab, pathology, imaging, and genomics data) in consistent, exchange-ready formats. 
  • Automated structuring of hard-to-use data—including unstructured notes, reports, and PDFs—to reduce manual chart abstraction burden. 
  • Privacy- and security-preserving access controls so authorized teams can use the right data without broad, risky data exposure. 
  • Near-real-time analysis enablement so care teams can apply decision support and compare relevant cohorts without months-long bespoke data pulls.

“Right now, families often become the de facto data exchange—carrying  papers from one specialist to another, hoping they have everything with them and that nothing gets lost in the gaps,” said ARPA-H Program Manager Erika Kim, Ph.D. “PCX is building the infrastructure so a child’s health information can securely follow them—so clinicians spend less time reconstructing the record and more time delivering the right care, faster.”

PCX builds on the Biomedical Data Fabric (BDF) Toolbox program, where research teams demonstrated an interoperable pediatric cancer data exchange across two large hospitals, including the ability to harmonize and map more than 90% of unstructured clinical data, electronic health records, and genetic data. PCX intends to bring best technologies and build foundational data exchange framework connecting 200 hospitals across the nation, including cloud-enabled healthcare institutions and rural community health centers. If successful, PCX will create a secure continuously learning data exchange network that accelerates care and ensures children receive treatment as quickly as possible.

“PCX is a perfect example of the ARPA-H model at work,” said ARPA-H Director Alicia Jackson, Ph.D. “When teams in a program like BDF prove that a bold idea can work, we don’t stop at a prototype—we double down to drive a promising solution all the way to patients. With PCX, we’re taking a technology that has already transformed pediatric cancer data-sharing capabilities in two hospitals and scaling it to include more than 200 health systems across the country, so children and families everywhere can benefit from faster, smarter, more connected care.”

ARPA-H’s decision to begin with pediatric cancer is driven by the readiness of the community, including robust commitments and initial investments from the public sector, private industry, and patient advocacy organizations, which have laid the groundwork for a successful, large-scale effort, like PCX, to transform care. ARPA-H will collaborate with leading pediatric hospitals, community and rural health centers, pediatric consortia, health IT and cloud providers, and patient advocacy organizations to build and test the PCX network in real-world clinical settings.

Currently participating networks as part of the PCX include Children’s Brain Tumor Network (CBTN), Children’s Oncology Group (COG), Genomic Information Commons (GIC), Pediatric Neuro-Oncology Consortium (PNOC), and the Undiagnosed Disease Network (UDN).

Several leading companies in AI, data, and health care have also pledged their commitment to support PCX through areas such as in-kind funding, computing credits for LLMs, and subject-matter expertise and engineering resources, including Amazon Web Services, Anthropic, Illumina, Kno2, Microsoft, Milken Institute, Google, and OpenAI.

For more on information on BDF, visit the program page.