Nicole Giroux knows what it’s like to wait for a precise diagnosis—and the effective treatment that comes along with it.
Her daughter Lila first showed symptoms of inoperable brain cancer nearly 15 years ago. Lila was just 15 months old at the time. Due to a lack of data, it would take an excruciating five years before the Giroux family had a more specific understanding of the molecular make-up for their little girl’s tumor. (Pictured above is Lila, alongside her mom Nicole in 2022.)
Lila shortly after she was diagnosed with inoperable brain cancer.“Shortly into that journey with treatment, my husband and I learned about the complete lack of treatment options for childhood brain cancer and the lack of funding available for research,” Giroux said.
In honor of her daughter, Giroux went on to start the Lilabean Foundation for Pediatric Brain Cancer Research. The foundation’s mission is to fund critical childhood brain cancer research and to help raise awareness of the severity of the fatal disease.
This week at the Amazon Web Services Inc. (AWS) summit in Washington D.C., AWS announced it is committing $10 million to empower nonprofit institutions to harness the power of the AWS cloud to advance pediatric and children’s causes worldwide. The funding will help to provide access to vital research for a vulnerable patient population that often suffers from restricted resources and limited sample sizes.
The initiative will support a growing consortium of hospitals and other institutions that use both cloud computing and artificial intelligence (AI) with the common goal to accelerate research and discoveries. By more effectively managing data in the cloud, researchers will be able to better understand the genetic make-up of diseases, which leads to quicker, more accurate diagnoses—and more effective personalized treatments for patients.
“We're so excited by the initiative that AWS is launching because it dovetails so perfectly into our narrative that despite being a rare disease, pediatric cancers truly provide a unique proving ground for new technology because of their dependency on real-time discovery and collaborative networks,” said Adam Resnick, director of the Center for Data Driven Discovery in Biomedicine at Children’s Hospital of Philadelphia (CHOP).
Adam Resnick, director of the Center for Data Driven Discovery in Biomedicine at Children’s Hospital of Philadelphia.AWS’s $10 million dollar commitment includes a $3 million philanthropic commitment that will be distributed between three organizations. The following organizations will receive $1 million dollars each to support their ongoing, mission-driven work: Children’s National Hospital in Washington, D.C.; Nationwide Children’s Hospital in Columbus, Ohio; and the Children’s Brain Tumor Network, located at CHOP. The Lilabean Foundation is a member organization of the Children’s Brain Tumor Network.
Through the new AWS IMAGINE Grant: Children’s Health Innovation Award, $7 million will be available to additional organizations for projects that accelerate pediatric research, advance maternal child total health, and/or empower the pediatric workforce and caregivers.
Beyond pediatric cancers, the funding will support research on all sorts of childhood diseases—from heart conditions to genetic disorders.
Pediatric diseases often get little attention, and fewer resources devoted to research
Although there are some serious side effects from many years of chemotherapy treatments, Lila is now an otherwise thriving 16-year-old. So many others are not that fortunate.
Childhood cancers like Lila’s make up less than 1% of all cancers diagnosed annually in the U.S. And while the five-year survival rates for childhood cancers are improving in developed nations, as many as two-thirds of childhood cancer survivors experience long-term effects from their treatments.
Clinical study data remains limited for many pediatric diseases and their treatments. Most registered pediatric studies are small-scale, single-center, and not funded by private industries or the federal government, which means fewer treatments are being studied over time. Because drug companies have less financial incentive to develop treatments for this small group of patients, children with cancer and other rare diseases often follow treatment plans that are adapted from adult protocols, and aren’t customized for their needs.
Genetic mutations also differ between childhood and adult cancers, which adds complexity for researchers. These distinct challenges for pediatric research require advanced solutions.
Managing data in the cloud is the first step for research collaboration
Working in silos is not the answer.
“Historically, all these scientists were working in silos and not sharing data, tissue samples, sequencing samples, all these things,” said Giroux. “We’ve got to work together. We've got to share data and play in the sandbox together.”
That sandbox is located in the cloud. AWS is where researchers can securely manage de-identified and anonymized data while safeguarding the privacy of patients and clinical study participants.
For researchers at Nationwide Children’s Hospital the cloud is used as a tool to compute on genomic data and then to share data and diagnostic results for pediatric cancer patients in a large study impacting pediatric cancer patients across the U.S. After being used to help inform diagnoses that are returned to the oncology provider for each patient, the anonymized data efficiently shared with the NCI Childhood Cancer Database via the cloud, where an even broader set of researchers can access them, nearly in real time.
“What we really want to do is make rare cancers less rare by providing this comprehensive information to those who really want to investigate for a variety of discovery-based goals,” said Elaine Mardis, PhD, co-executive director of the Steve and Cindy Rasmussen Institute for Genomic Medicine in the Abigail Wexner Research Institute at Nationwide Children’s Hospital.
Dr. Mardis indicated that broadly sharing information in cloud-based databases can allow genomic aspects of rare cancers to be teased out, attracting the attention of scientists who may not have had sufficient power to identify these due to unavailability of siloed data sets.
“What’s driving discovery, in the most immediate term, is enabled by the cloud,” she said.
AI-driven medical research is the next frontier
Creating cloud-based data repositories is only the first step to more effectively treat rare childhood diseases. AWS can power data-driven insights and innovative applications to enhance care, increase efficiency of care delivery, and personalize treatment plans.
For the team at Children’s National Hospital AI-powered applications are already helping to screen babies for rare genetic conditions by assessing facial features using smartphone cameras to identify subtle changes in those features shortly after birth. Tested on patients in 30 countries, the application can help screen children who may not have access to a geneticist nearby.
Rheumatic heart disease is another condition where AI has been applied to make low-cost, portable ultrasound imaging accessible for patients with fewer resources. In Uganda, for example, 200,000 children are expected to be screened in coming years.
“I'm very interested in health equity,” said Marius George Linguraru, the Connor Family professor and chair of Research and Innovation at Children’s National Hospital. “We are doing a lot more work in the U.S. than abroad because when it comes to something that requires already sophisticated imaging and image interpretation, those resources exist much more in the high-income world. I'm always fascinated about finding an easier, more affordable, more flexible solution that can be applied somewhere else too.”
Personalized cancer treatment is one more arena where AI is already being used to advance health care for children. Linguraru’s team is working with colleagues across the U.S. to improve and personalize the treatment plans for children with brain tumors.
These advancements in cloud computing and AI application are precisely what Giroux hopes will improve the outlook for families like hers in the future.
The Giroux family on Christmas in the early days of Lila's treatment.“For every family that's diagnosed, I want their child to have options,” she said, “You’re presented with impossible choices. And I don’t want that anymore. I know things are changing, and I know there’s progress being made.”
AWS is deeply committed to supporting the important work needed to advance pediatric health, and this philanthropic commitment will empower nonprofit institutions around the world to harness the power of the AWS cloud to advance pediatric and children’s causes.
Learn more about the AWS IMAGINE Grant: Children’s Health Innovation Award program.
Learn more about the AWS IMAGINE Grant: Children’s Health Innovation Award program.
