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White paper

Real-world data fills rare disease data gaps

Data removes the barriers to understanding rare disease.


data on a mission

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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