What if a child with a complex disease had their full medical data follow them to every hospital in the country, so parents could focus on their child and care teams had everything they needed? 

The Problem 

• A child with a complex disease is often seen by multiple care teams, frequently across different health systems. Every visit generates records, images, and molecular results, but those pieces live in siloed systems that do not talk to each other. 
• Care teams rebuild the picture by hand, families repeat their story at every visit, and a clinician facing a rare diagnosis usually cannot see how similar children were treated elsewhere or what happened to them. The result is delayed diagnosis, delayed treatment, and unnecessary duplication of effort. 

The Solution 

• The Pediatric Care eXpansion (PCX) program will eliminate technical barriers to nationwide data sharing across more than 200 pediatric hospitals, enabling families, clinicians, and researchers to quickly access the multimodal clinical data needed to deliver fast, high quality care and generate new scientific insight. 
• PCX will automatically structure hard-to-use data into usable forms for researchers and care teams, apply privacy and security preserving controls so authorized care teams see only what they need, and deliver near real time analysis for decision support and cohort comparison at the push of a button.
• Starting with pediatric cancer and extending to other complex diseases, PCX will speed diagnosis and treatment, improve outcomes for pediatric patients, and create a foundation for broader industry adoption across additional populations and clinical applications. 

Only ARPA-H can... 

• Break through entrenched technical, operational, and interoperability barriers that keep pediatric data fragmented nationwide. 
• Unify patient data across 200+ pediatric hospitals, each with different architectures, standards, and governance models.  
• Deliver the open source tools, methods, and standards that let health systems stand up their own hubs, so the network spreads through replication rather than through the efforts of a central owner.