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DATACC BY DIME PROJECT

Defining core digital measures for
Pediatric rare disease research & care

Customize the core measures set to fit your needs

This tool will help you to create a personalized core set of digital clinical measurements for your specific individual cases, conditions, or populations. Answer a few questions about your needs, and the tool will create a phenotype profile with tailored measurement recommendations.

Additionally, you can explore fictional patient personas below to see how these measures may work in practice. 


Next steps

Establishing a foundation of common data elements and shared ontologies is critical for enabling the global interoperability required to bridge the gap between pediatric rare disease research and clinical practice.