Rare Disease Day and Advances in Care Through Real-World Evidence
March 10, 2022
Rare Disease Day, which takes place every year on February 28th, highlights the rare disease community’s needs, challenges, and successes. For this year’s Rare Disease Day, Darcy Hodge of The Evidence Base detailed how real-world evidence (RWE) has driven progress in the rare disease field. A key component of these efforts has been the collection and organization of real-world data through disease registries.
According to Hodge, “Publications have demonstrated the positive benefits of gathering RWD about rare diseases through registries. One such example is the Autoinflammatory Disease Alliance (AIDA) Network, which is comprised of retrospective and prospective RWD from those living with non-infectious scleritis1. The tool utilizes electronic health records to gain the necessary data and later generates RWE.”
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(Source: The Evidence Base, February 21st, 2022)