However, aggregation and curation of this data currently lacks automation, meaning that a clinical research coordinator often has to manually extract the required data elements from varied and disparate electronic health record (EHR) and other systems in order to get them into a unified database. This process is costly and prone to human error. It is also time-intensive and diverts precious resources away from direct patient care and other higher-value activities. The use of cloud-based technologies can streamline this — reducing the time it takes for newly enrolled patients’ data to be entered and analyzed in the database from months to near real-time.

AWS is applying expertise in secure semi-federated clinical data ingestion to develop standards-based application programming interfaces (APIs) to do this. In simple terms, APIs are intermediaries that allow two applications to talk to each other. Via automated feeds, the data is transported directly into the cloud-based database and stored securely. Once fed into the database, these massive data sets can be easily accessed in real-time by participating researchers and clinicians. AWS and its partners’ advanced analytics capabilities and machine learning tools can then be simply applied to find undiscovered patterns in target patient groups. Researchers can conduct multi-modal assessments to gather insights, for example identifying genetic variants and unexpected clustering of biomarker data to aid in understanding of disease and treatment response.


One type of brain tumor the CBTN is helping to research is called diffuse intrinsic pontine glioma (DIPG). DIPG is a rare cancer that primarily affects children and young adults. Unfortunately, fewer than 10% of children survive two years from diagnosis. Most current cancer treatments have only been studied in adults, and evaluating the optimal treatment type, dose, and efficacy for children is an urgent research priority. To Jace Ward, who passed away in 2021 from DIPG, this urgency was important to convey.

“Jace dedicated the last two years of his life to championing research and coined the phrase ‘DIPG won’t wait’,” said Lisa Ward, Jace’s mom and co-founder of Tough2gether Against DIPG/DMG, a patient advocacy organization that works closely with the CBTN. “I’m so hopeful in the power of what AWS and CBTN can achieve. Providing scientists and clinicians near real-time access to shared data can bring us closer to Jace’s vision: hope for extending the lives of those who receive the dark diagnosis of brain cancer.”

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