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White paper

Real-world data fills rare disease data gaps

Data removes the barriers to understanding rare disease.


Rare disease research and treatment development is uniquely challenging given the limited understanding of rare and genetic diseases. 

A lack of insight into the natural history of these diseases and their clinical manifestations are a hurdle to effectively addressing them. So, too, are missing efficacy endpoints and the underrepresentation of such diseases in medical coding systems.

Bolster insights with longitudinal data

De-identified, real-world data (RWD) features claims and electronic health record (EHR) data. It also encompasses data from other encounters such as labs, diagnostics and post-surgical care data to present an end-to-end view of patient care.

This robust, longitudinal patient view makes RWD an invaluable tool for stakeholders across the health system. Read how it creates a remarkable opportunity for researchers and product developers in the rare disease space to fill the data divide to power the development of effective treatment options.



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