The Value of Linked Datasets in Rare Genetic Disease Research

In this discussion, Datavant and Dr. Michael Kruer of Phoenix Children’s Hospital, Dr. Jacob Kean of the University of Utah, and Paul Gross, founder of the CP Research Network share an overview of the CP Research Network.

They discuss how they are transforming CP care utilizing fit-for-purpose clinical registry data, CP Research Network’s vision for enabling research and quality data embedded in the EMR and how to unlock the discovery of genetic causes for CP and other rare diseases by linking real-world datasets.