The tool, called RADIANT, is designed to gather data in real time from the electronic medical records of children with rare diseases around the country.
Megan Walker with her daughter, Lily, embrace one another in September 2022 at their home in Havertown. Lily was diagnosed with astrocytoma, a life-threatening brain cancer, in March 2019 when she was 14. The tumor is inoperable.to roll out a tool to gather and share data on childhood rare diseases, with the goal of transforming their care.
RADIANT will be more than just a basic database of medical information. For instance, for some surgeons, the first encounter they have with a child with a brain tumor is when they see their MRI taken in the ER. “We’re trying to fundamentally change how we query in that we’re trying to query the latest, most up-to-date data as possible,” saidAn ultimate goal of the project is also to transform clinical trials of rare diseases in childhood.
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