AWS and Children’s Brain Tumor Network: Powering multi-modal data sharing for pediatric brain cancer research

Cancer remains the leading cause of death from disease for children, with nearly 10,000 cases diagnosed each year and over 1,000 children dying annually in the United States alone. The most common solid tumors are brain tumors, with 4,000 children and adolescents diagnosed with a primary brain tumors each year. The White House’s re-ingited Cancer Moonshot has goals of reducing the cancer death rate in the U.S. by at least half by 2047 and also improve the experience of patients, family members and others touched by the illness. Recognizing the need to accelerate the pace of translational research, discover new treatments, and identify cures, Amazon Web Services (AWS) has committed to supporting the Children’s Brain Tumor Network (CBTN) with their mission of connecting researchers and harmonizing data from around the globe.

CBTN is a consortium of 34 member institutions/hospitals with over 6000 enrolled individuals, spanning 30+ brain tumor diagnoses, and over 66,000 bio-banked samples and 150 pre-clinical models. CBTN has built a first-of-its-kind data workflow and multi-modal data warehouse. “With AWS as our technology partner, we are accelerating the pace of research and the move towards finding a cure for children with brain tumors,” said Adam Resnick, PhD, scientific director of CBTN. “We’re confident the combined expertise of both our teams and the power of the cloud can get the right types of data securely to the right research teams who can help move the needle in pediatric cancer research” said Ken Harris, academic medicine and state and local government (SLG) healthcare provider lead at AWS and executive sponsor of the CBTN collaboration.

While CBTN and AWS are both proponents of open science models for accelerating time to cure for pediatric brain tumor patients, the need for speed does not supersede healthcare data security and privacy, which is why CBTN was an early adopter of AWS HealthLake, a HIPAA-eligible service for clinical data ingestion, storage, and analysis utilizing the Fast Healthcare Interoperability Resources (FHIR) specification. CBTN adopted FHIR to ensure data from disparate sources, such as electronic health records and clinical data warehouses from multiple sites, could be exchanged and interpreted in a standard manner. The established framework for FHIR data has also enabled AWS and CBTN to get an early start with Generative AI and Large Language Models (LLMs) for a variety of use cases including making the data more accessible for research coordinators to query with natural language, enabling cohort identification of patients with similar profiles to a newly consented patient, and eventually clinical trial matching.

From Left to Right: Ben Moscovitch (Public Policy, AWS), Nicole Giroux (Executive Director, Lilabean Foundation), Adam Resnick (Scientific Director, CBTN), Ashwini Davison (Academic Medicine, AWS) | September, 2023 at the BrainStorm Summit in Washington DC

It is the goal of both CBTN and AWS to turn stories of heart-wrenching struggle into stories of hope and inspiration. At the upcoming re:Invent 2023 conference, we’ll showcase one such story of resilience and hope, to celebrate our journey with CBTN, and raise the awareness on childhood brain cancer, and the need for critical research.

This year, we’ll be distributing limited-edition pins, designed by 5-year old Cameron, a patient with recurrent anaplastic ependymoma, who’s been supported by The Lilabean Foundation (LBF), a CBTN Executive Council member. This pin is a symbolic reminder of the continued impact of cloud-based innovations on cancer research. When you attend re:invent, take a moment to reflect on the direct impact of the advances in technology. Stop by the Healthcare and Life Sciences Expo Pavilion at the Venetian to collect your pin and help spread the message of hope and inspiration shared by Cameron, CBTN, LBF, and AWS.