Children’s Brain Tumor Network (CBTN), Amazon Web Services (AWS) clinical leadership, and patient advocates met to discuss how technology can improve approaches to pediatric oncology research.
Earlier this year, US President Joe Biden set a goal to end cancer as we know it by improving prevention, screening, diagnosis, and treatment. In reigniting the Cancer Moonshot, the Administration will bring relevant departments and agencies together to form a Cancer Cabinet and has issued a call to action to the private sector to join the effort.
To address cancer on multiple fronts, two specified actions are: 1) target the right treatments to the right patients, and 2) seek progress against the most deadly and rare cancers, including childhood cancers. To answer this call, Amazon Web Services (AWS) is expanding its ongoing work with the Children’s Brain Tumor Network (CBTN). Together, AWS and the CBTN will enable researchers and clinicians to share and analyze medical record, imaging, genomic, and other data in near real-time to speed development of new therapies for pediatric brain cancers.
This work will kick off soon at three of CBTN’s primary clinical sites— Children’s Hospital of Philadelphia (CHOP), Seattle Children’s Hospital, and University of California San Francisco—with the goal of expanding to other collaborating centers afterward.
“We strongly believe in supporting scientific discovery and shared knowledge via a collaborative, data-driven, and open-science approach,” said Adam Resnick, PhD, scientific director of CBTN. “AWS is leaning in to help enable the type of data sharing and accessibility we need to accelerate the pace of research and move faster towards an era of individualized care for children with brain tumors.”
Among all childhood cancers, brain tumors are the leading cause of death. Clinicians and researchers need better access to multiple types of data in order to identify an optimized, individualized treatment approach for each child and develop the next generation of therapies. Today, CBTN—which runs via a coordinating center at CHOP—has data sharing agreements with 32 institutions around the globe. At these institutions, patients are enrolled on local institutional review board (IRB)-approved protocols through which consent is provided for the sharing of de-identified clinical data, demographics, and medical history information. As a result, more than 30 types of de-identified brain and spinal cord tumor clinical and molecular data, biospecimens, diagnosis and treatment data, imaging data, and cell-lines are available at no cost to academic researchers. This open science model enables scientists around the globe to work together on finding treatments, saving time, and building on existing research rather than replicating it and keeping it siloed within the walls of their institutions.
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.”
AWS’s collaboration with CBTN to advance Cancer Moonshot builds on a long relationship, including work on the Pediatric Brain Tumor Atlas (PBTA), Gabriella Miller Kids’ First Data Resource Center, and CAVATICA analytics platform, all of which are running on the AWS Cloud.
“AWS is proud to continue our work with the CBTN with the shared goal of deploying technology to improve outcomes for children and young adults with brain cancer,” said Ken Harris, academic medicine and state and local government (SLG) healthcare provider lead at AWS and executive sponsor of the CBTN collaboration. “We’re confident the combined expertise of this team and power of the cloud can accelerate research in this space and hopefully apply to other cancers in support of the Cancer Moonshot’s goal of ending cancer as we know it.”
Read related stories on the AWS Public Sector Blog:
to get the latest in AWS tools, solutions, and innovations from the public sector delivered to your inbox, or contact us.
Please take a few minutes to share insights regarding your experience with the AWS Public Sector Blog in this survey, and we’ll use feedback from the survey to create more content aligned with the preferences of our readers.
This content was originally published here.