[Whitepaper] Standardizing and Linking Diverse Registry and Other Real-World Observational Data Yields Enhanced Understanding of Rare Diseases and Their Treatments

In this whitepaper, UBC will show the value of standardizing diverse registry data into a common structure to assemble real-world evidence to complement ad hoc observational research. This HIPAA-compliant “universal-registry” approach efficiently improves evidence generation to enable better insight into disease natural history and treatment patterns, particularly for rare diseases. This process includes data linkage via tokenization in order to enhance registry data with other healthcare information.

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